Disability meanings according to patients and clinicians: imagined recovery choice pathways

Objective  The purpose of this study was to explore how the meaning of disability varies between patients with acute-onset activity limitations and clinicians, and between males and females. Methods  Seventy-nine patients undergoing inpatient rehabilitation and 93 practicing rehabilitation clinicians in the USA developed personal recovery choice pathways through recovery preference exploration (RPE). Imagining complete dependence in 18 activities as diverse as eating and expression, each individual determined an optimal sequence of recovery. This sequence was used to determine the relative value of each activity compared with the other 17. Three comparisons were made by calculating the mean absolute difference (MAD) in median utilities, including patients versus clinicians, male versus female patients, and male versus female clinicians. The MAD shows the relative magnitude of disparity between each pair. Results  The MAD value between patients and clinicians was 3.4 times larger and 4.8 times larger than the MAD values between male and female patients and male and female clinicians, respectively. Conclusions  The much larger difference in recovery preferences between patients and clinicians compared with differences between genders suggests that life contexts of being a patient with disabilities versus a clinician are more potent determinants of activity limitation perspectives than being a man or woman.     

Do patients' communication behaviors provide insight into their preferences for participation in decision making?

BACKGROUND: The Institute of Medicine report "Crossing the Quality Chasm' encourages physicians to tailor their approaches to care according to each patient's individual preferences for participation in decision making. How physicians should determine these preferences is unclear. OBJECTIVE: The objective of this study is to assess whether judgments of patient communication behaviors, either globally or individually, can yield insight into patient preferences for participation in decision making. METHODS: Using questionnaire responses to 3 items about the desired level of participation in decision making from a communication study involving 886 audiotaped visits between older patients and surgeons, the authors purposively selected 25 patients who preferred a large role and 25 who preferred a small role in decision making. Two independent raters listened to the audiotapes and coded them for the presence of 7 communication behaviors (question asking, information behavior, initiating, statements of preference, processing, resistance, deference). On the basis of their listening and coding, raters judged patient preferences for participation in decision making. RESULTS: Neither rater accurately judged preferences for participation in decision making beyond chance agreement (kappa statistics: rater 1 = 0.16, rater 2 = 0.20). Inter-rater reliability for the communication behaviors was also generally poor. Area-under-the-curve values for all communication behaviors hovered around 0.50, indicating that none of the behaviors had adequate power to discriminate between patients preferring large versus small roles. CONCLUSION: Patient preferences for participation in decision making cannot be reliably judged during routine visits based on judgments of patient communication behaviors. Engaging patients in a discussion of preferences for decision making may be the best way to determine the role each wants to play in any given decision.     

In the absence of evidence, who chooses? A qualitative study of patients' needs after treatment for colorectal cancer

OBJECTIVES: To identify the range of patient pathways following surgery for colorectal cancer and explore patients' needs and preferences for follow-up. METHODS: A survey of hospitals within the UK Colorectal Cancer Services Collaborative and qualitative thematic analysis of 39 in-depth narrative interviews with colorectal cancer patients. Participants volunteered or were contacted through hospital consultants, support groups and general practitioners (GPs). Most of the interviews were collected in respondents' homes, throughout the UK. RESULTS: Thirty-five (70%) hospitals supplied details of their follow-up regime. There was a wide variation: only three hospitals specifically stated that patients were given a choice about the type of follow-up. The patients' interviews highlighted their need for a responsive GP and realistic information about recovery, resources and diet. Choice is particularly important because patients differ in their views of the benefits of hospital follow-up. CONCLUSIONS: The absence of evidence about what constitutes ideal clinical follow-up for colorectal cancer is reflected in current hospital practice. In such circumstances, the preferences of individual patients are particularly important. Not all patients want repeated specialist investigations but those without stomas, and therefore no access to a stoma nurse, need another source of advice about recovery and long-term practical help. Follow-up care organised by GPs may be acceptable to many patients. We suggest a list of topics for GPs to discuss with their patients about follow-up. The needs described by patients are not extensive and could often be met by existing resources.     

'It's the system working for the system': carers' experiences of learning disability services in Ireland

The aim of this article is to examine the experiences of families with young adults with learning disabilities trying to access services. The landscape of disability services for this group is made up of day care, special vocational training and respite places. It aims to identify the extent of an implementation gap between government rhetoric and the degree to which services are characterised as being non-supportive interactions on the ground. Using Ireland as a case study, during a time when the economy is booming and government rhetoric claims unparalleled developments in allocating resources and extra respite 'places', this article identifies the main challenges faced by family carers associated with accessing appropriate services for their disabled adult child, in their attempt to achieve greater independence. This article reports the findings of a qualitative study in which individual semistructured interviews were held with family carers ( n  = 25) and representatives from national carer organisations ( n  = 6) in Ireland. These were people caring for an adult (18–30 years) with a learning disability and their experiences were also useful in cross-checking the carer organisation interviews. The findings show that there is limited flexibility, choice and availability in meeting the preferences of the service-users, and throughout the study, services were characterised as being non-supportive interactions. This is not simply symptomatic of a lack of resources. Despite improved funding, supportive attitudes and flexibility are still crucial in meeting user requirements at the level of delivery; thus highlighting that often the system works for the system, not for the user.     

EXERCISE PREFERENCES OF PATIENTS IN SUBSTANCE ABUSE TREATMENT

While emerging studies have demonstrated the benefit of exercise in early recovery from substance use disorders, recruitment and adherence to exercise interventions have been challenging. Tailoring interventions based on patient exercise preferences may address these concerns. Ninety-seven (N=97; age=41.6 years; 44% female) patients were recruited from an intensive substance abuse outpatient program and filled out questionnaires about their exercise preferences. Most (71%) patients were not currently engaged in an exercise program (i.e., exercising less than 20 minutes/day for 3 days/week over the last 6 months). The vast majority (95%) expressed an interest in engaging in an exercise program specifically designed for persons in substance use recovery and 89% reported wanting to initiate an exercise program within the first 3 months of sobriety. Specific exercise preferences regarding type of physical activity, exercise intervention components, and perceived benefits and barriers to exercise differed between males and females. These findings suggest low rates of regular exercise, high level of interest in engaging in exercise during early recovery, and point toward the need to tailor interventions to the unique preferences of individuals.     

Knowledge of results and learning to tell the time in an adult male with an intellectual disability: a single-subject research design

The present study investigated whether knowledge of results, in the form of visual and audible feedback, would increase the accuracy of time-telling in an individual with an intellectual disability. A 19-year-old male with mild intellectual disability participated in this A1-B1-A2-B2 single-subject study design. The task involved correctly identifying the time given on a computer. Data, based on the Wilcoxon signed-rank test, showed that the participant demonstrated a greater number of correct responses during the intervention phases. Incorporating knowledge of results into a learning strategy for this individual with intellectual disability resulted in an increased ability to accurately identify the correct time on an analogue clock. There is a need to replicate the study design to increase the external validity and generalization of results. The strategies described in the present study may also be useful for occupational therapists who teach individuals with intellectual disability to gain skills in their everyday activities of daily living (ADLs).     

Preferences for health care involvement, perceived control and surgical recovery: a prospective study

In a sample (N = 75) of coronary bypass patients, we examined the manner in which preoperative perceptions of personal control over recovery, desires for behavioral involvement in health care, and desires for information about health care predicted recovery in the hospital. Results indicated that preoperative control beliefs and desires for health care involvement predicted independently several important indices of recovery. Specifically, patients who prior to their surgery expressed a greater desire for information tended to experience less surgical pain and more negative psychological reactions. Greater preferences for behavioral involvement were associated with greater pain behavior, more ambulation, and shorter hospital stays. Finally, greater perceived personal control over recovery was associated with a shorter hospital stay.     

Infectious diseases in primary care; managing the interface between the person and the community

Respiratory infections are still among the most common new diagnoses in primary care. The most frequent reason for encounter is acute cough. General practitioners have to make antibiotic prescribing decisions in a context of diagnostic uncertainty, patient preferences and antimicrobial resistance. There is a causal link between antimicrobial resistance and antibiotic prescribing in primary care. GRACE observational studies (www.grace-lrti.org), show that variation in clinical presentation does not explain the considerable variation in antibiotic prescribing in Europe for adults presenting in primary care with acute cough and that recovery is similar between those treated with any antibiotic, a particular antibiotic class, or no antibiotic. A GRACE randomized controlled trial (RCT) of the effect of antibiotics for acute cough has recruited more patients than all RCTs combined in the current Cochrane Review and will have the power to identify subgroups of patients who will (not) benefit from amoxicillin. Another multi-country GRACE RCT assessing the effect on antibiotic prescribing of largely web-based versions of successful interventions including a C-reactive protein point-of-care test, a communication skill training and an interactive patient booklet is awaited. Given potential long-term cost-effectiveness, the GRACE suite of observational and interventional studies are enhancing the evidence base for reducing diagnostic uncertainty and managing patient expectations in a patient-centred way to achieve greater evidence-based antibiotic prescribing that is likely to help containing antimicrobial resistance.     

'It's got so politically correct now': parents' talk about empowering individuals with learning disabilities

Over the last decade the UK Government has made proposals to empower individuals with learning disabilities. Strategies have been implemented to reduce institutionalisation and social segregation. Consequently, some learning disability services are being phased out and the focus of care has moved away from institutions and into the community and family domain. Focusing on discourse as a site for social action and identity construction, we used critical discursive psychology to examine focus group discussions between family carers about facilitating the independence of adult family members with learning disabilities. Unlike official UK Government and learning disability services' constructions of empowerment policy, we found that parents invoked empowerment talk: (1) as a resource to construct the facilitation of independence as an abstract, irresponsible, politically correct professional trend; (2) dilemmatically with meritocratic or practical arguments to undermine notions of facilitating choices; and (3) as a resource to construct new service developments as contrary to the preferences of people with learning disabilities. Parents also described individuals with learning disabilities as unable to cope, and drew stark contrasts between their practice and those of service-professionals when expressing concerns about empowerment. We discuss possible implications of such discourses and contrasts on opportunities for empowering individuals with learning disabilities.     

Partnerships with patients: the pros and cons of shared clinical decision-making

The traditional style of medical decision-making in which doctors take sole responsibility for treatment decisions is being challenged. Attempts are being made to promote shared decision-making in which patients are given the opportunity to express their values and preferences and to participate in decisions about their care. Critics of shared decision-making argue that most patients do not want to participate in decisions; that revealing the uncertainties inherent in medical care could be harmful; that it is not feasible to provide information about the potential risks and benefits of all treatment options; and that increasing patient involvement in decision-making will lead to greater demand for unnecessary, costly or harmful procedures which could undermine the equitable allocation of health care resources. This article examines the evidence for and against these claims. There is considerable evidence that patients want more information and greater involvement, although knowledge about the circumstances in which shared decision-making should be encouraged, and the effects of doing so, is sparse. There is an urgent need for more research into patients' information needs and preferences and for the development and evaluation of decision-support mechanisms to enable patients to become informed participants in treatment decisions.     

Impoverishment and patients' "willingness" and "ability" to pay for improving the quality of health care in Palestine: an assessment using the contingent valuation method

This paper examines the impact of impoverishment on patients' preferences with respect to improving the quality of health care, by focusing on the sudden impoverishment experience that affected the Occupied Palestinian Territory (OPT) since the beginning of the second Palestinian Uprising of September 2000. Two random samples of patients (352 and 353 individuals, respectively) were interviewed about their willingness to pay for improving a set of quality attributes in delivery of primary health care, prior and after the occurrence of this crisis situation, using a contingent valuation questionnaire. Impoverishment did not seem to affect the structure of patients' preferences vis-à-vis some essential quality attributes such as "doctor-patient relationship" and "drug availability". However, preferences toward "luxury" quality attributes, e.g., "geographical proximity" and "waiting time", suffered from both income-dependent and income-independent negative impoverishment effects. We conclude that impoverishment might not only affect individuals' availability of resources but also the ability of certain groups of patients, notably women, villagers and the elderly, to adequately express their preferences toward improving the quality of health care delivery. The issue of how willingness to pay results should be interpreted in the light of our study for policy implications was discussed. The study raises strong doubts about the current policy of introducing patients' cost recovery schemes for funding primary health care in the current crisis situation of the OPT.     

Prevention of delayed recovery and disability of work-related upper extremity disorders

There is always a psychological component to any illness or injury, and unless it is appropriately addressed, such factors can complicate or delay the recovery from a work-related illness or injury. When a worker experiences delayed recovery and unexpected disability, significant contributing psychosocial factors must be assessed for and managed appropriately. A maladaptive belief or understanding about the condition and disability by a patient presents an obstacle to successful treatment. Using cognitive behavioral therapy techniques may be an effective means of managing this challenge for the clinician.     

Alternative approaches to derive disability weights in injuries: do they make a difference?

Background

In burden of disease studies, several approaches are used to assess disability weights, a scaling factor necessary to compute years lived with disability (YLD). The aim of this study was to quantify disability weights for injury consequences with two competing approaches, (a) standard QALY/DALY model (SQM) which derives disability weights from patient survey data and (b) the annual profile model (APM) which derives weights for the same patient data valued by a panel.

Methods

Disability weights were assessed using (a) EQ-5D data from a postal survey among 8,564 injury patients 2½, 5, and 9 months after attending the Emergency Department, and (b) preferences of 143 laymen elicited with the time trade-off method.

Results

Compared with APM, SQM disability weights were consistently higher. YLD calculated with SQM disability weights was more than three times higher compared with YLD calculated with APM disability weights, for mild injuries with short duration, this increase was six fold.

Conclusions

The APM seems the preferred method in burden of injury studies that includes mild conditions with a rapid course, since the SQM approach might overestimate the impact of the latter. The APM, however, might underestimate the impact of injury consequences, especially in case of severe injuries.     

Health Literacy,Numeracy, and Other Characteristics Associated With Hospitalized Patients' Preferences for Involvement in Decision Making

Little research has examined the association of health literacy and numeracy with patients' preferred involvement in the problem-solving and decision-making process in the hospital. Using a sample of 1,249 patients hospitalized with cardiovascular disease from the Vanderbilt Inpatient Cohort Study (VICS), we assessed patients' preferred level of involvement using responses to two scenarios of differing symptom severity from the Problem-Solving Decision-Making Scale. Using multivariable modeling, we determined the relationship of health literacy, subjective numeracy, and other patient characteristics with preferences for involvement in decisions, and how this differed by scenario. The authors found that patients with higher levels of health literacy desired more participation in the problem-solving and decision-making process, as did patients with higher subjective numeracy skills, greater educational attainment, female gender, less perceived social support, or greater health care system distrust (p < .05 for each predictor in multivariable models). Patients also preferred to participate more in the decision-making process when the hypothetical symptom they were experiencing was less severe (i.e., they deferred more to their physician when the hypothetical symptom was more severe). These findings underscore the role that patient characteristics, especially health literacy and numeracy, play in decisional preferences among hospitalized patients.     

Shared decision making in hypertension: the impact of patient preferences on treatment choice

BACKGROUND:Recent guidelines for treatment of hypertension advocate a multifactorial approach based on absolute risk of a cardiovascular event. However, this does not take any account of individual patient values or preferences for health outcomes that result from having hypertension. OBJECTIVE:Our aim was to investigate the impact of patient preferences on treatment recommendations for hypertension using individual decision analysis. METHODS:We carried out an observational study based on interviews with 52 hypertensive patients. Patient preferences were measured using the standard gamble method. Associations between outcome of the individual decision analyses (recommendation to accept or decline antihypertensive medication) and treatment guidelines based on blood pressure and absolute cardiovascular risk were investigated. Adherence to medication during the 6 months following the interview was also assessed. RESULTS:Individual patient preferences have a substantial impact on the proportion of patients for whom drug treatment would be recommended. In 52 patients interviewed, decision analysis indicated that 29 [56%, 95% confidence interval (CI) 41--70] should be treated, compared with 27 (52%, 38--66) using a cardiovascular risk of > or =10% over 5 years and 19 (37%, 24--51) using a systolic blood pressure of > or =160 mmHG: There was marked disagreement between the decision analysis and these recommendations (kappas 0.18 or less). There was no relationship between outcome of the decision analysis and adherence to medication [chi-square (1 d.f.) = 0.5, P = 0.5]. CONCLUSIONS:Quantifying patients' preferences and using decision analysis as a shared decision-making aid appears to have an impact on whether patients would be recommended for antihypertensive medication. Further evaluation of this method as a shared decision-making tool is warranted.     

Informed consent: court viewpoints and medical decision making

Twenty-five years of appellate court decisions about informed consent in three influential states were examined to address four issues: the criteria used to define adequate informed consent; trends in court decisions; parallels between court decision making and decision analysis; the contribution of decision analytic concepts to defining "reasonable" medical informed consent. Court standards have evolved in three phases: the "medical community" standard before 1972, the "reasonable person" standard since 1972, and recent inroads toward developing an "individual preference" standard. The latter two standards form the current basis for deciding whether a patient has been adequately informed. Decision analysis offers a framework for communication about medical outcomes and probabilities, and methods for assessing preferences. Jurists and physicians should consider whether the legal system should adopt a decision analytic perspective in the doctrine of informed consent. Researchers should address issues raised by use of decision analysis for communication between the physician and the patient.     

Patient characteristics as predictors of primary health care preferences: a systematic literature analysis

Abstract

Objective

To identify associations between various cultural and demographic factors and patients’ primary health care preferences. Search strategy Searches were performed in MEDLINE (1966–December 2000), PsycINFO (1977–May 2001) and Sociological Abstracts (1963–December 2000). Identified papers were checked for more papers. Inclusion criteria Studies with a focus on primary health care or health care in general, asking patients about preferences with regard to health care, reporting quantitative results and examining the relations between specific patient characteristics and patient preferences. Data extraction and synthesis Data were extracted from studies using a scoring form to register what methods were used, which patient characteristics were analysed and which patient characteristics significantly influenced patients’ preferences with regard to different aspects of health care (P < 0.05). Main results A total of 145 studies were included with 2276 comparisons between subgroups of patients. Of all the comparisons, 607 (27%) showed a significant association between patient characteristics and preferences with regard to primary health care. Age and economic status significantly related to patient preferences in 38 and 33% of the comparisons, respectively. Education, health status, family situation, sex, and utilization of health care related significantly to patient preferences in less than 25% of the comparisons. Conclusions This review of the literature showed patient characteristics to be an important determinant of preferences regarding many aspects of primary health care defined as general practice care or health care, in general. All of the patient characteristics examined here showed at least some significant associations with preferences for primary health care.     

Combining patient preferences with expected treatment outcomes to inform decision-making

Patient-centered care involves patients in decision-making about their medical care. Effective shared decision-making requires relevant evidence on the expected health outcomes of treatment, assessment of patient preferences for possible health outcomes, and a method to synthesize this information. Few tools exist to help clinicians and patients synthesize clinical evidence and personal preferences. We develop a statistical framework that combines multiple data sources on expected treatment outcomes with individual preferences to produce a personalized preference-weighted outcome score (PWOS). The PWOS can be calculated for multiple treatments and compared to determine which will provide the best balance of risks and benefits given a patient’s preferences. We demonstrate our method by evaluating adjuvant chemotherapy regimens for colorectal cancer. We begin by identifying heterogeneity in patient preferences for health outcomes associated with colorectal cancer disease and treatment, finding classes of patients who value efficacy and side effects differently. Then we fit a hierarchical Bayesian model to randomized clinical trials and produce posterior distributions of expected outcomes under three chemotherapy regimens. We use the PWOS to combine distinct sets of patient preferences with these expected outcomes. Our method preserves estimation uncertainty and accounts for correlation among outcomes. In a simulation study of applying PWOS to make decisions at the population level, we find that our methods are most useful when there are large differences in individual preferences and small distinctions in treatment efficacy (i.e., preference-sensitive settings).