The Patient

Providing a good patient experience is a key part of providing high-quality medical care. This paper explains why patient experience is important in its own right, and its relationship to other domains of quality. We describe methods of measuring patient experience, including issues relating to validity, reliability and response bias. Differences in reported patient experience may sometimes reflect differences in expectations of different population groups and we describe the arguments for and against adjusting patient experience data for population characteristics. As with other quality improvement strategies, feeding back patient experience data on its own is unlikely to improve quality: sustained and multiple interventions are usually required to deliver sustained improvements in care.

Clinical guidelines and health technology assessments are valuable instruments to improve the quality of healthcare delivery and aim to integrate the best available evidence with real-world, expert context. The role of patient and public involvement in their development has grown in recent decades, and this article considers the international literature exploring aspects of this participation, including the integration of experiential and scientific knowledge, recruitment strategies, models of involvement, stages of involvement, and methods of evaluation. These developments have been underpinned by the parallel rise of public involvement and evidence-based medicine as important concepts in health policy. Improving the recruitment of guideline group chairs, widening evidence reviews to include patient preference studies, adapting guidance presentation to highlight patient preference points and providing clearer instructions on how patient organisations can submit their intelligence a...

Discrete-choice experiments (DCEs) have become a commonly used instrument in health economics and patient-preference analysis, addressing a wide range of policy questions. An important question when setting up a DCE is the size of the sample needed to answer the research question of interest. Although theory exists as to the calculation of sample size requirements for stated choice data, it does not address the issue of minimum sample size requirements in terms of the statistical power of hypothesis tests on the estimated coefficients. The purpose of this paper is threefold: (1) to provide insight into whether and how researchers have dealt with sample size calculations for healthcare-related DCE studies; (2) to introduce and explain the required sample size for parameter estimates in DCEs; and (3) to provide a step-by-step guide for the calculation of the minimum sample size requirements for DCEs in health care.

Measuring the quality of care at the end of life and/or the quality of dying and death can be challenging. Some measurement tools seek to assess the quality of care immediately prior to death; others retrospectively assess, following death, the quality of end-of-life care. The comparative evaluation of the properties and application of the various instruments has been limited. This systematic review identified and critically appraised the psychometric properties and applicability of tools used after death. We conducted a systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines by systematically searching MEDLINE, Embase, CINAHL, and PsycINFO for relevant studies. We then appraised the psychometric properties and the quality of reporting of the psychometric properties of the identified tools using the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) checklist. The protocol of this syste...

A uniform package of benefits and uniform cost sharing are elements of regulation inherent in most social health insurance systems. Both elements risk burdening the population with a welfare loss if preferences for risk and insurance attributes differ. This suggests the introduction of more choice in social health insurance packages may be advantageous; however, it is widely believed that this would not benefit the elderly.A representative telephone survey of 1000 people aged >24 years living in the German- and French-speaking parts of Switzerland was conducted. Participants were asked to compare the status quo (i.e. their current insurance contract) with ten hypothetical alternatives. In addition, participants were asked questions concerning utilization of healthcare services; overall satisfaction with the healthcare system, insurer and insurance policy; and a general preference for new elements in the insurance package. Socioeconomic variables surveyed were age, sex, total hous...

The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes. This review aims to identify symptoms, concerns and outcomes that matter to children and young people ("young people") with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes. This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies. Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young...

Health promotion has become an integral part of primary healthcare for patients with chronic illness. A practical instrument to identify patient needs in health promotion will support patient-centered health counseling. The objective of the study was to develop and pilot test the 'Health Promotion Diabetes' (HEPRODIA) instrument, which aims to identify the needs of patients with diabetes mellitus for health-promoting activities with regard to their preferred lifestyle behavior change. Scale development of the instrument was guided by existing insights and expert opinion. Questionnaire data were collected in a sample of patients (n = 221) from eight primary care practices in the southern part of the Netherlands. The resulting instrument comprised a fixed set of 14 items to elicit patients' preferred lifestyle change, plus a variable set of 4-20 items concerning specific barriers and support needs regarding the chosen change. The instrument provides a starting point for di...

BACKGROUND: Although antidepressants and counseling have been shown to be effective in treating patients with depression, non-treatment or under-treatment for depression is common especially among the elderly and minorities. Previous work on patient preferences has focused on medication versus counseling, but less is known about the value patients place on attributes of medication and counseling. OBJECTIVE: Conjoint analysis has been recognized as a valuable means of assessing patient treatment preferences. We examine how conjoint analysis be used to determine the relative importance of various attributes of depression treatment at the group level as well as to determine the range of individual-level relative preference weights for specific depression treatment attributes. In addition we use conjoint analysis to predict what modifications in treatment characteristics are associated with a change in the stated preferred alternative. STUDY DESIGN: 86 adults who participated in an inte...

Measuring the quality of care at the end of life and/or the quality of dying and death can be challenging. Some measurement tools seek to assess the quality of care immediately prior to death; others retrospectively assess, following death, the quality of end-of-life care. The comparative evaluation of the properties and application of the various instruments has been limited. This systematic review identified and critically appraised the psychometric properties and applicability of tools used after death. We conducted a systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines by systematically searching MEDLINE, Embase, CINAHL, and PsycINFO for relevant studies. We then appraised the psychometric properties and the quality of reporting of the psychometric properties of the identified tools using the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) checklist. The protocol of this syste...

As several studies have been conducted to elicit patients' preferences for cancer treatment, it is important to provide an overview and synthesis of these studies. This study aimed to systematically review discrete choice experiments (DCEs) about patients' preferences for cancer treatment and assessed the relative importance of outcome, process and cost attributes. A systematic literature review was conducted using PubMed and EMBASE to identify all DCEs investigating patients' preferences for cancer treatment between January 2010 and April 2016. Data were extracted using a predefined extraction sheet, and a reporting quality assessment was applied to all studies. Attributes were classified into outcome, process and cost attributes, and their relative importance was assessed. A total of 28 DCEs were identified. More than half of the studies (56%) received an aggregate score lower than 4 on the PREFS (Purpose, Respondents, Explanation, Findings, Significance) 5-point scale...

Cost-effectiveness models for diabetes link glycated hemoglobin (HbA1c) to diabetes-related complications. Independent of diabetes-related complications, there is little known on the association between HbA1c and health utility scores. This link can alter the cost effectiveness of interventions designed to improve HbA1c. The cross-sectional relationship between HbA1c and health utility scores in adult type 1 diabetes patients was estimated after adjusting for diabetes-related complications. The EuroQoL-5 dimension (EQ-5D) questionnaire and an ad hoc survey requesting demographic information and adherence to glucose monitoring therapies was administered to adult type 1 diabetes patients during a clinic visit and combined with clinical medical record data. Health utility scores were derived using the US time-tradeoff valuation of the EQ-5D. Linear regression was used to estimate the relationship between HbA1c and utility, adjusting for treatments, demographics, and diabetes-related complications. Among 176 patients, mean (standard deviation [SD]) age was 38 (12.2) years, duration of disease was 22 (12.1) years, and number of chronic conditions other than type 1 diabetes was 2.7 (2.0). Unadjusted mean (SD) utility was 0.94 (0.09) for those with HbA1c levels <7 % (n = 54), 0.89 (0.15) for those with HbA1c ≥ 7 % (n = 122), and 0.91 (0.14) for all patients. After adjustment, a 1 % absolute increase in HbA1c was associated with a disutility of -0.03 (95 % confidence interval [CI] -0.049, -0.006). Findings suggest that, after adjusting for diabetes-related complications, higher HbA1c levels are associated with a significant health disutility. Pending additional data from longitudinal studies, these findings could be used in cost-effectiveness evaluations of type 1 diabetes interventions that impact HbA1c.

Consideration of patient preferences regarding delivery of mental health services within primary care may greatly improve access and quality of care for the many who could benefit from those services. This project evaluated the feasibility and usefulness of adding a consumer-products design method to qualitative methods implemented within a community-based participatory research (CBPR) framework. Discrete-choice conjoint experiment (DCE) added to systematic focus group data collection and analysis. Focus group data were collected from 64 patients of a Federally-Qualified Health Center (FQHC) serving a predominantly low-income Hispanic population. A total of 604 patients in the waiting rooms of the FQHC responded to the DCE. The DCE contained 15 choice tasks that each asked respondents to choose between three mental health services options described by the levels of two (of eight) attributes based on themes that emerged from focus group data. The addition of the DCE was found to be f...

Insulin analog glargine (GLA) has been available as one of the therapeutic options for patients with type 1 diabetes mellitus to enhance glycemic control. Studies have shown that a decrease in the frequency of hypoglycemic episodes improves the quality of life (QoL) of diabetic patients. However, there are appreciable acquisition cost differences between different insulins. Consequently, there is a need to assess their impact on QoL to provide future guidance to health authorities. A systematic review of multiple databases including Medline, LILACS, Cochrane, and EMBASE databases with several combinations of agreed terms involving randomized controlled trials and cohorts, as well as manual searches and gray literature, was undertaken. The primary outcome measure was a change in QoL. The quality of the studies and the risk of bias was also assessed. Eight studies were eventually included in the systematic review out of 634 publications. Eight different QoL instruments were used (two ...

Providers often prescribe counseling and/or medications for tobacco cessation without considering patients' treatment preferences. The primary aims of this study are to describe (1) the development of a discrete choice experiment (DCE) questionnaire designed to identify the attributes and levels of tobacco treatment that are most important to veterans; and (2) the decision-making process in choosing between hypothetical tobacco treatments. We recruited current smokers who were already scheduled for a primary care appointment within a single Veterans Affairs (VA) healthcare system. Subjects were asked to rate the importance of selected treatment attributes and were interviewed during two rounds of pilot testing of initial DCE instruments. Key attributes and levels of the initial instruments were identified by targeted literature review; the instruments were iteratively revised after each round of pilot testing. Using a 'think aloud' approach, subjects were interviewed whi...

Patients with ulcerative colitis (UC) frequently require long-term therapy to prevent relapse. Treatments such as 5-aminosalicylic acid (5-ASA [mesalazine]) are efficacious and well tolerated, but adherence to treatment is often poor. This discrete-choice experiment (DCE) was conducted to estimate differences in patient preferences for 5-ASA treatment in mild-to-moderate UC based on levels of self-reported adherence. Inclusion of patients residing in the US, UK, Germany, and Canada allowed for assessment of possible cultural differences in patient preferences. DCE attributes were determined through literature review, clinician consultation, and patient interviews. Six treatment attributes were identified: ease of swallowing, time of day, quantity, extent of flare resolution, likelihood of flare occurrence, and cost. A total of 400 patients in four countries completed the DCE and adherence (Modified Morisky Scale) surveys. Data were analyzed using generalized estimating equations to estimate patient preference and willingness to pay (WTP) by levels of self-reported adherence and country of residence. All attributes had expected polarity and were significant predictors of patient preference. Self-reported 'good' versus 'poor' adherers significantly preferred symptom control (p = 0.0108) and mucosal healing (p = 0.0190) attributes. All patients stated preference for symptom control/mucosal healing and flare risk attributes; the latter attribute was significantly preferred across all countries. Country differences in patient preference for convenience versus clinical attributes were found. Overall, patients were willing to pay £29.24 ($US46.27) per month for symptom control and mucosal healing, and an additional £78.81 ($US124.70) per month for reduction in flare risk to 10% per year (WTP costs were equalized between each country using the published 2008 purchasing power parity). Those with flares in the past year significantly preferred avoiding future flares (p < 0.0001) versus other attributes, as well as lower risk of flares (10%, likelihood ratio: 0.64-0.70). Findings indicate that self-reported adherers to UC therapy have a stronger preference for clinical benefits over other treatment attributes, suggesting that positive patient assessment of effectiveness may influence adherence. Ongoing clinician assessment of patient preferences for treatment attributes, as well as education on the importance of adherence, may help improve treatment outcomes in UC.

BACKGROUND: Although antidepressants and counseling have been shown to be effective in treating patients with depression, non-treatment or under-treatment for depression is common especially among the elderly and minorities. Previous work on patient preferences has focused on medication versus counseling, but less is known about the value patients place on attributes of medication and counseling. OBJECTIVE: Conjoint analysis has been recognized as a valuable means of assessing patient treatment preferences. We examine how conjoint analysis be used to determine the relative importance of various attributes of depression treatment at the group level as well as to determine the range of individual-level relative preference weights for specific depression treatment attributes. In addition we use conjoint analysis to predict what modifications in treatment characteristics are associated with a change in the stated preferred alternative. STUDY DESIGN: 86 adults who participated in an inte...

In recent years, patient-reported outcomes such as health-related quality of life have become important areas of clinician focus in general cancer management. Patients' preferences for, and/or satisfaction with, oral versus intravenous (IV) chemotherapy schedules may have a major impact on such outcomes. To evaluate preferences for oral or IV chemotherapy in patients with advanced colorectal cancer. A multicenter, randomized, crossover trial was conducted in 12 hospitals in Southern Italy, in which 22 patients with advanced colorectal cancer received one cycle of oral capecitabine ± irinotecan or oxaliplatin, followed by one cycle of an IV de Gramont or similar regimen (arm A), or the same regimens in reverse order (arm B). Patients were aged 50-70 years and 21% had a higher level of education (graduate or similar). Patients received oral capecitabine 3500 mg/m/day for 7 days (± irinotecan 180 mg/m or oxaliplatin 85 mg/m on day 1 only), followed by an IV de Gramont regimen ± irinotecan (FOLFIRI) or oxaliplatin (FOLFOX); or the two schedules administered in reverse order.The main outcome measure was patients' preferences for oral versus IV chemotherapy, as determined by a pre- and post-treatment therapy preference questionnaire (TPQ). Before treatment, 75% of patients preferred oral therapy. Characteristics that patients considered to be important were that treatment should not interfere with daily activities (100% of patients) and should not cause fatigue (95%), diarrhea (76%), or painful mouth ulcers (76%); other factors considered important were the risk of infection and nausea (90%), and that treatment could be administered at home (65%). After receiving both chemotherapy schedules, only 45% of patients preferred oral therapy, while 55% preferred IV therapy. Among the latter, the most important characteristics influencing treatment choice were less nausea (66%), fewer mood effects (65%), the safety of hospital IV treatment (62%), less interference with family relationships (55%), less vomiting (55%), less interference with daily activities (50%), and less diarrhea (50%). Although the order in which patients received therapy did not influence treatment preference, significantly fewer patients with a lower rather than higher educational level preferred oral therapy (47% vs 80%; chi-square test = 9.9; p = 0.002). These results suggest that there may be a correlation between educational level and the preference of patients with advanced colorectal cancer for oral or IV chemotherapy.

Qualitative methods such as semi-structured interviews and focus-groups are used to evaluate the applicability and relevance of device technologies in clinical practice, but when used alone, often lack generalizability. This study aimed to assess the face validity and feasibility of using a composite, three-step qualitative method (the Parker Model), to inform the development and implementation of ava, an electromechanical device (e-Device) for subcutaneous self-administration of the biologic, certolizumab pegol (CZP), used to treat rheumatic diseases. The Parker Model combines concept mapping (CM), participatory design (PD), and stakeholder evaluation (SE). CM, a structured group process, was used to identify patients' opinions and concerns regarding the e-Device. Patients used this information in iterative PD sessions to create personal e-Device prototypes in cooperation with a designer and a healthcare professional. SE was performed based on semi-structured group and individu...

: Tuberculosis (TB) constitutes one-quarter of all avoidable deaths in developing countries. In the Eastern Cape, South Africa, TB is a public health problem of epidemic proportion. Poor compliance and frequent interruption to treatment are associated with increased transmission rates, morbidity, and costs to TB control programs. This study explored determinants of (non-)compliance from the patients' perspective. : Semi-structured interviews were conducted with patients (33 treatment compliers and 34 treatment non-compliers) and 14 community health workers from local community clinics and the hospital in the township of Grahamstown, Eastern Cape, South Africa. Q-methodology was used. Patients rank ordered 32 opinion statements describing determinants of treatment compliance from the TB adherence model. By-person factor analysis was used to explore patterns in the rankings of statements by compliers and non-compliers. These patterns were interpreted and described as patient views on determinants of compliance with treatment. Patients and community health workers selected the top five determinants of compliance and non-compliance. : Compliers believed that completing treatment would cure them of TB. Economic prospects were crucial for compliance. Compliers felt that the support of the government disability grant helped with compliance. Non-compliers believed that stigmatization had the greatest impact on non-compliance, together with the burden of disease, the arrangements involved with receiving treatment, restrictions accompanying treatment, and the association of TB with HIV/AIDS infection. : Stigmatization makes TB a 'social disease'. Individual motivation and self-efficacy appear to have a considerable effect on compliance, but, for non-compliers, the general lack of job prospects and being able to provide for themselves or their family also makes TB very much an 'economic disease'.

People often form groups or segments that have similar interests and needs and seek similar benefits from health providers. Health organizations need to understand whether the same health treatments, prevention programs, services, and products should be applied to everyone in the relevant population or whether different treatments need to be provided to each of several segments that are relatively homogeneous internally but heterogeneous among segments. Our objective was to explain the purposes, benefits, and methods of segmentation for health organizations, and to illustrate the process of segmenting health populations based on preference coefficients from a discrete choice conjoint experiment (DCE) using an example study of prevention of cyberbullying among university students. We followed a two-level procedure for investigating segmentation incorporating several methods for forming segments in Level 1 using DCE preference coefficients and testing their quality, reproducibility, and usability by health decision makers. Covariates (demographic, behavioral, lifestyle, and health state variables) were included in Level 2 to further evaluate quality and to support the scoring of large databases and developing typing tools for assigning those in the relevant population, but not in the sample, to the segments. Several segmentation solution candidates were found during the Level 1 analysis, and the relationship of the preference coefficients to the segments was investigated using predictive methods. Those segmentations were tested for their quality and reproducibility and three were found to be very close in quality. While one seemed better than others in the Level 1 analysis, another was very similar in quality and proved ultimately better in predicting segment membership using covariates in Level 2. The two segments in the final solution were profiled for attributes that would support the development and acceptance of cyberbullying prevention programs among university students. Those segments were very different-where one wanted substantial penalties against cyberbullies and were willing to devote time to a prevention program, while the other felt no need to be involved in prevention and wanted only minor penalties. Segmentation recognizes key differences in why patients and physicians prefer different health programs and treatments. A viable segmentation solution may lead to adapting prevention programs and treatments for each targeted segment and/or to educating and communicating to better inform those in each segment of the program/treatment benefits. Segment members' revealed preferences showing behavioral changes provide the ultimate basis for evaluating the segmentation benefits to the health organization.

Health systems are placing more and more emphasis on the design and delivery of services that are focused on the patient, and there is a growing interest in patient involvement in health policy research and health technology assessment (HTA). Furthermore, there is a growing research interest in eliciting patients' views, not only on 'what works' for patients but also on the need for intervention and on factors influencing the implementation of particular health technologies, their appropriateness and acceptability. This article focuses on qualitative research synthesis in eliciting patients' perspectives. Its aim is to bring research closer to policy development and decision making, to facilitate better use of research findings for health and welfare, to generate a body of evidence, and to ensure that effective and appropriate information is used in health policy decision design. A variety of synthesizing approaches in qualitative research are explored, such as m...

BackgroundQualitative research can inform the development of asthma patient-reported outcome (PRO) measures and user-friendly technologies through defining measurement constructs, identifying potential limitations in measurement and sources of response error, and evaluating usability.ObjectiveThe goal of the current study was to inform the development of a comprehensive asthma PRO assessment with input from patients and clinical experts.MethodSelf-reported adult asthma sufferers recruited from a 3,000 member New England-area research panel participated in either one of three focus groups (N=21) or individual cognitive item debriefing interviews (N=20) to discuss how asthma impacts their health-related quality of life (HRQOL), and provide feedback on a preliminary set of asthma impact survey items and prototype patient report. Focus groups and cognitive interviews were conducted using traditional research principles (e.g., semi-structured interview guide, probing, and think aloud techniques). An Expert Advisory Panel (N=12) including asthma clinical specialists and measurement professionals was convened to review results from the focus group and cognitive interview studies and make recommendations for final survey and report development.ResultsDomains of health impacted by asthma included physical (recreation, play, competitive sports, and exercise), social (activities, family relationships), emotional (anger, upset, frustration, anxiety, worry), sleep, role (recreational/leisure activities; work), and sexual functioning. Most items in the impact survey were easily understood, covered important content, and included relevant response options. Items with contradictory examples and multiple concepts were difficult to comprehend. Suggestions were made to expand survey content by including additional items on physical and sexual functioning, sleep, self-consciousness, stigma, and finances. Reports were considered useful and participants saw value in sharing the results with their doctor. Graphic presentation of scores was not always understood; participants preferred tabular presentation of score levels with associated interpretative text. Display of inverse scores for different measures (higher scores equaling better health on one scale and worse health on another) shown on a single page was confusing. The score history section of the report was seen as helpful for monitoring progress over time, particularly for those recently diagnosed with asthma.Expert panelists agreed that displaying inverse scores in a single summary report may be confusing to patients and providers. They also stressed the importance of comprehensive interpretation guidelines for patients, with an emphasis on what they should do next based on scores. Panelists made recommendations for provider and aggregate-level reports (e.g., “red flags” to indicate significant score changes or cut-points of significance; identification of subgroups that have scored poorly or recently gotten worse).ConclusionIncorporating input from patients, clinicians, and measurement experts in the early stages of product development should improve the construct validity of this PRO measure and enhance its practical application in healthcare.

The purpose of this study was to identify patient beliefs as well as clinical realities about insulin that may be barriers to type 2 diabetes patients initiating insulin treatment when recommended by their physician. This information was then used to develop a clinically relevant, cross-culturally valid patient education tool with the goal of providing unbiased, medically informative statements addressing these barriers. Thirteen focus groups were conducted in five countries (Germany, Sweden, The Netherlands, UK, and USA) to collect qualitative data on attitudes about insulin therapy from type 2 diabetes patients aged 18 or older whose physician had recommended initiating insulin treatment in the past 6 months (n = 87). Additionally, a panel of four clinical experts was interviewed to ascertain obstacles they experience in initiating insulin with their patients. On the basis of the interview data, the ten questions that asked about the most important barriers were generated. The cli...