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PubMed2001

Patients' values for health states associated with hepatitis C and physicians' estimates of those values.

OBJECTIVES: Hepatitis C is the leading cause of chronic hepatitis in the United States. Little information is available regarding how persons with hepatitis C view health with their disease. We studied patients' perceptions about the value of hepatitis C health states and evaluated whether physicians understand their patients' perspectives about this disease. METHODS: A total of 50 consecutive persons with hepatitis C were surveyed when they presented as new patients to a hepatology practice. Subjects provided utility assessments (preference values) for five hepatitis C health states and for treatment side effects. They also stated their threshold for accepting antiviral therapy. Five hepatologists used the same scales to estimate their patients' responses. RESULTS: On average, patients believed that hepatitis C without symptoms was associated with an 11% reduction in preference value from that of life without infection, and the most serious condition (severe symptoms, cirrhosis) was believed to carry a 73% decrement. Patients judged the side effects of antiviral therapy quite unfavorably, and their median stated threshold for accepting treatment was a cure rate of 80%. Physicians' estimates were not significantly associated with patients' preference values for hepatitis C health states, treatment side effects, or with patients' thresholds for accepting treatment. In multivariate analysis, patients' stated thresholds for taking treatment were significantly associated with their decisions regarding therapy (beta = -2.72+/-1.21, p = 0.025). CONCLUSIONS: There was little agreement between patients' preference values about hepatitis C and their physicians' estimates of those values. Utility analysis could facilitate shared decision making about hepatitis C.

Adult↗
PubMed1990

Oral health education and promotion in maternal and child health: a position paper.

Oral health education and promotion are the connecting mechanisms among prevention, policy development and program implementation, maintenance and evaluation. Given the preventive procedures available today, all focus populations of women and children should have access to accurate information about such procedures as well as access to the procedures themselves. Furthermore, appropriate methodologies need to be utilized for community oral health education and these methods differ from those commonly used for individual education. In the context of maternal and child health there are unprecedented opportunities for new accomplishments in oral health. The health education model most appropriate for these groups is the public health model, an approach designed to empower as well as inform, and one that fosters shared decision making among community members and health professionals. Dental professionals have the responsibility to address this challenge, and to help correct the health information inequities that prevail, especially among the traditionally informationally disenfranchised subfocus populations discussed in this paper.

Child↗
PubMed2005

Surveillance for isocyanate asthma: a model based cost effectiveness analysis.

AIMS: Because logistical and financial obstacles impede using large prospective cohort studies, surveillance decisions in occupational settings must often be made without evidence of relative benefits and costs. Using the example of isocyanate induced asthma, the most commonly reported immune mediated occupational asthma, the authors developed a model based approach to evaluate the costs and benefits of surveillance from both an employer and a societal perspective. METHODS: The authors used a mathematical simulation model of isocyanate asthma to compare annual surveillance to passive case finding. Outcome measures included symptom free days (SFD), quality adjusted life years (QALY), direct costs, productivity losses, and incremental cost effectiveness ratio (CER), measured from the employer and the societal perspectives. Input data were obtained from a variety of published sources. RESULTS: For 100,000 exposed workers, surveillance resulted in 683 fewer cases of disability over 10 years. Surveillance conferred benefits at an incremental cost of 24,000 dollars/QALY (employer perspective; 13.33 dollars/SFD) and was cost saving from the societal perspective. Results were sensitive to assumptions about sensitisation rate, removal rates, and time to diagnosis, but not to assumptions about therapy costs and disability rates. CONCLUSIONS: Baseline results placed the CER for surveillance for isocyanate asthma within the acceptable range. Costs from the societal and employer perspective differed substantially with a more attractive CER from the societal perspective, suggesting opportunities for employer/societal cost sharing. The analysis demonstrates the value of a model based approach to evaluate the cost effectiveness of surveillance programmes for isocyanate asthma, and to inform shared decision making among clinicians, patients, employers, and society. Such a modeling approach may be applicable to surveillance programmes for other work related conditions.

Absenteeism↗
PubMed2003

"Doing prescribing": how might clinicians work differently for better, safer care.

Prescribing medicines is a cornerstone of medical practice. There is, however, ample evidence that the prescribing process is far from ideal when viewed from the perspective of patients who wish to understand why they should take medicine, what potential harm they might face, and how they might integrate medicine taking into the pattern of their life, beliefs, and attitudes. Misalignment between clinicians and patients about medicine taking leads to a multitude of problems. Recently, a concept known as concordance has been suggested, where the prescribing interaction is seen as a process where both the patient and professional views and beliefs about medication, and the associated harms and benefits, are shared and negotiated. This interaction depends on a communication process that is becoming known as shared decision making between clinicians and patients. Although there is as yet little evidence that this approach leads to improved clinical outcomes, ethical principles and the core values of medical practice suggest that involving patients in the prescribing process will lead to better, safer care.

Attitude of Health Personnel↗
PubMed2005

Tensions in public health policy: patient engagement, evidence-based public health and health inequalities.

This paper examines the proposition that there are considerable tensions between key strategies in health policy--namely, evidence-based approaches to population health improvement, reduction of health inequalities, and public and patient engagement--using (1) a critical analysis of the intersection of evidence-based public health, patient and public engagement, and health inequalities policies from a social constructionist perspective and (2) mathematical modelling of paternalistic and shared decision making in the management of hypertension in a random age and sex stratified community sample of residents of south east Northumberland, UK. It is concluded that there may be unintended effects on population health of incongruities in major components of public health policy. Greater public and patient engagement may militate against the disease prevention goals of evidence-based policy, and may better engage sections of the population who already benefit from greater access and better health associated with social status and opportunity, serving to increase inequalities by further marginalising those already suffering from relative exclusion.

Adult↗
PubMed2005

Do patients with schizophrenia wish to be involved in decisions about their medical treatment?

OBJECTIVE: Little is known about the desire of patients with schizophrenia to be involved in medical decisions affecting their treatment. METHOD: The authors administered the Autonomy Preference Index to 122 inpatients with schizophrenia. In addition, the patients filled out the Drug Attitude Inventory. Sociodemographic data and Positive and Negative Syndrome Scale ratings were available for all patients. RESULTS: The patients expressed a desire for shared decision making that was slightly greater than that of primary care patients. Negative attitudes toward medical treatment and younger age were associated with a higher desire for participation. CONCLUSIONS: It is important to meet the participation needs of patients who are dissatisfied with their psychiatric treatment.

Adult↗
PubMedDate not supplied

Prophylactic mastectomy or screening in women suspected to have the BRCA1/2 mutation: a prospective pilot study of women's treatment choices and medical and decision-analytic recommendations.

BACKGROUND: Women suspected to have the BRCA1/2 mutation may choose between two management options: breast cancer screening and prophylactic mastectomy (PM). OBJECTIVES: To compare women's treatment choices with medical and decision-analytic recommendations and to explore variables related to the women's choices. METHODS: After provision of information, individual time-tradeoff values for the health outcome "living after PM" were assessed and incorporated into a decision-analytic model, which compared the management options PM and screening with respect to their effects on quality-adjusted life expectancy. RESULTS: Of the 54 women suspected to have the mutation, 51 completed the shared-decision-making procedure. Quality-adjusted life expectancy after PM management was longer for 67% of proven carriers and for 58% of women awaiting the DNA-test result. Twelve proven carriers made definitive treatment choices: eight (67%) chose PM and four (33%) chose screening. All carriers' treatment choices agreed with the normative decision-analytic recommendations. Four (33%) disagreed with the medical recommendations. Of the 36 women awaiting DNA-test results, 32 made hypothetical treatment choices. The agreement between these hypothetical treatment choices and the decision-analytic recommendations was good (78%). Combining data from all 48 women, being married (OR = 14.00, p = 0.006), having children (OR = 4.71, p = 0.02), low desire to participate (OR = 0.14, p = 0.004), high decisional stress (OR = 5.22, p = 0.01), a lower estimate of the "probability of cure for screen-detected breast cancer" (OR = 0.13, p = 0.004), and higher time-tradeoff values for PM (OR = 182, p < 0.0001) made a choice for PM more likely. CONCLUSIONS: The complete agreement between the decision-analytic recommendations and the carriers' choices suggests that women act in accordance with normative decision theory. The disagreement between the carriers' choices and the medical recommendations suggests that women's choices and physicians' recommendations were guided by different arguments. The strong association between time-tradeoff value and treatment choice suggests that the time-tradeoff is a valid method to assess preferences.

Adult↗
PubMedDate not supplied

Decreased use of adjuvant breast cancer therapy in a randomized controlled trial of a decision aid with individualized risk information.

OBJECTIVE: Oncology patients often seek involvement in their medical consultations. Such involvement is endorsed by most health care providers and mirrored in practice guidelines. However, oncologists exhibit great variation in how they provide patients with disease-relevant information, and many remain reluctant to do so at all. The authors examined the impact of a patient-specific decision aid on women's decisions about adjuvant therapy for breast cancer. METHOD: 386 women with breast cancer were randomized to receive either an informational pamphlet about adjuvant therapy (usual care) or a patient-specific, evidence-based decision aid about adjuvant therapy. The authors compared rates of adjuvant therapy between the groups controlling for age, education, marital status, race, tumor severity, and practice type of their physician (university-based or community-based). RESULTS: Among women with low tumor severity, only 58% (35/60) of women in the decision aid group chose adjuvant therapy, compared to 87% (33/38) of their counterparts in usual care (P<0.01). CONCLUSIONS: This study illustrates the important impact of medical decision aids on treatment choices, particularly for patients for whom treatment has little benefit. In the case of adjuvant therapy for breast cancer, providing individualized, evidence-based risk information for shared decision making resulted in fewer women with low tumor severity choosing adjuvant treatment.

Aged↗
PubMedDate not supplied

Assessment of the time-tradeoff values for prophylactic mastectomy of women with a suspected genetic predisposition to breast cancer.

BACKGROUND: Female carriers of the breast-cancer-susceptibility genes BRCA1 and BRCA2 are at high risk for breast cancer (85%). They face the choice between prophylactic mastectomy (PM) and breast cancer screening. For this treatment choice, a shared-decision-making program was developed. In this program, the time tradeoff (TTO) was used to assess preferences for PM. PURPOSE: Assessment of the feasibility, constant proportional tradeoff, and reliability of using the TTO for this purpose. METHODS: Fifty-four women suspected to carry the BRCA1/2 mutation were provided with comprehensive relevant information. Their preferences for PM were assessed on two occasions. Discrepancies between preferences indicated by the two tests were resolved by testing a third time. The preferences assessed on the last occasion were used for individual decision analyses. In order to test constant proportional tradeoff, the TTO consisted of four items with different numbers of life years. RESULTS: Forty-two women (78%) completed the TTO twice and nine women (17%) performed the test a third time. Three women (5%) completed the TTO only once. The mean TTO value for PM at the last replication was 0.69 (SD=0.30). Violations of constant proportional tradeoff were significant: the largest tradeoffs were recorded for the shortest durations. Pearson's correlation coefficient between the TTO values for the two last sessions was 0.96. CONCLUSION: Assessment of individual preferences by the TTO in this patient group is feasible and reliable. Therefore, the TTO can be used in clinical settings to elicit treatment preferences of women proven or suspected to have a genetic predisposition to breast cancer.

Adult↗
PubMed2006

Power imbalance and consumerism in the doctor-patient relationship: health care providers' experiences of patient encounters in a rural district in India.

The aim of this study is to explore health care providers' experiences and perceptions of their encounters with male and female patients in a rural district in India with special reference to tuberculosis (TB) care. The authors conducted semistructured interviews with 22 health care providers, 17 men and 5 women, from the public and private health care sectors. Findings reveal that doctors adopted an authoritarian as well as a consumerist approach in the medical encounter, indicating that power imbalances in the doctor-patient relationship are negotiable and subject to change. Gender was identified as an influencing factor of the doctor's dominance. A patient-centered approach, acknowledging patients' own experiences and shared decision making, is called for and should be included in TB control activities. This seems to be especially important for female patients, whose voices were not heard in the medical encounter.

Adult↗
PubMed2026

Evaluating A Patient-Led Health Literacy Program for People Living With Metastatic Breast Cancer.

IntroductionLow cancer health literacy undermines patients' ability to interpret complex information and participate in shared decision making, and is associated with worse outcomes. Evidence for effective health literacy interventions in metastatic breast cancer (MBC) remains limited. We evaluated a patient-led, virtual health literacy program designed to strengthen MBC-specific knowledge and self-efficacy.MethodsWe conducted a mixed-methods, pre-post evaluation across two program iterations (Fall 2023; Spring 2024) delivered by a national, patient-led-MBC organization, Project Life. The five-week synchronous course called Spinning Science covered breast cancer subtyping, genetic/genomic testing, clinical trials, circulating tumor DNA, and information literacy, with small-group activities and polling. Program participants were adults living with MBC. De-identified pre/post surveys assessed (1) self-efficacy for engaging in health decisions, and (2) knowledge using items adapted from the Cancer Health Literacy Test aligned to course content. Paired two-sample t-tests examined pre-post changes (&#x3b1;=0.05). Open-ended responses were analyzed thematically.ResultsFifty-four people with MBC were enrolled (cohort 1, n=17; cohort 2, n=37); 46 provided matched pre- and post-surveys (14 and 32, respectively). Agreement with "I don't know enough to make my own medical decisions" declined from 43% pre to 13% post (p<0.05), indicating improved self-efficacy. Baseline knowledge scores were high, and knowledge item gains were not statistically significant, consistent with ceiling effects. Post-program items showed >80% agreement for increased confidence in self-advocacy, improved health literacy, and sense of community. Qualitative feedback highlighted strengths like digestible content, approachable patient facilitators and flexible scheduling, as well as priorities for refinement such as continued access to materials, and more MBC-specific and numeracy content.ConclusionsA patient-developed, virtual health literacy program for people living with MBC showed meaningful improvements in self-efficacy, with actionable, participant-driven refinements between cohorts. This model offers a practical, scalable pathway for advancing self-efficacy within and beyond MBC.

Humans↗
PubMed1999

Ethical Issues in End-of-Life Care.

BACKGROUND: Physicians who treat patients approaching the end of life often face moral, ethical, and legal issues involving shared decision making, futility, the right to refuse medical treatment, euthanasia, and physician-assisted suicide. METHODS: The author examines cases that involve these issues and also reviews the ethical principles that guide current medical practice. Issues such as end-of-life ethical questions, the right to life-sustaining therapy, medical futility, the distinction between killing and allowing to die, and physician-assisted suicide are discussed. RESULTS: The principal problem involves the appropriate use of technology at the end of life. While developments in technology have enhanced our ability to prolong life, issues have also arisen regarding the resulting quality of life, the sometimes marginal benefits to our patients, and the burdens that this technology imposes on patients, families, and society. CONCLUSIONS: Legal and ethical issues continue to confront patients, courts, and physicians. A better understanding of these issues and an awareness of the availability of effective palliative care will help physicians, patients, and families adequately address the end-of-life issues that are an intrinsic part of medical care.

Journal Article↗
PubMed1996

Community coalitions for prevention and health promotion: factors predicting satisfaction, participation, and planning.

Coalitions currently are a popular tool for promoting community-based solutions to health problems, such as alcohol, tobacco, and other drug (ATOD) abuse. Private foundations, granting agencies, and other public health organizations assume that participation of community members in health promotion coalitions will increase the likelihood of program success. This article examines whether key characteristics of coalitions are related to effectiveness as measured by member satisfaction, commitment to the coalition, and the quality of planning efforts. Member survey data from the first year evaluation of an ATOD coalition were analyzed using factor analysis, chi-square, and multiple regression techniques at both the individual and group levels. The results suggest that community leadership, shared decision making, linkages with other organizations, and a positive organizational climate were key determinants of member satisfaction and participation. These same factors were not related to the quality of coalition plans. However, the significance of coalitions for community empowerment and health promotion is discussed.

Alcoholism↗
PubMed2002

Enhancing physician-patient communication.

Physician-patient communication encompasses the verbal and nonverbal interactions that form the basis for the doctor-patient relationship. A growing body of research and guidelines development acknowledges that physicians do not have to be born with excellent communication skills, but rather can learn them as they practice the other aspects of medicine. Improvement in physician-patient communication can result in better patient care and help patients adapt to illness and treatment. In addition, knowledge of communication strategies may decrease stress on physicians because delivering bad news, dealing with patients' emotions, and sharing decision making, particularly around issues of informed consent or when medical information is extremely complex, have been recognized by physicians as communication challenges. This paper will provide an overview of research aimed at improving patient outcome through better physician-patient communication and discuss guidelines and practical suggestions immediately applicable to clinical practice.

Communication↗
PubMed2005

General practitioner attitudes to the care of people with epilepsy: an examination of clustering within practices and prediction of patient-rated quality of care.

BACKGROUND: There is wide variation in the quality of care provided by primary care practices to individuals with chronic illnesses. Individual doctor attitudes and interest have been demonstrated to influence patient outcomes in some instances. Given the trend towards larger practices and part-time working, continuity of care is likely to fall and thus practice-based rather than individual general practitioner attributes and attitudes are likely to become increasingly important. The aim in this paper was to examine the extent to which individual general practitioner (G.P.) attitudes to the care of people with epilepsy cluster within practices and predict patient-rated quality of care. METHODS: The sample consisted of 1255 people with active epilepsy (a recent seizure or on anti-convulsant medication for epilepsy) and 199 GPs from 82 general practices. Measures of GP attitudes (a 17-item GP attitudes questionnaire) and patient-rated quality of epilepsy care were obtained. 1210 individuals completed initial questionnaires and 975 patients filled in final questionnaires one year later. Responses were achieved from 64 practices (83% of total) and 115 GPs (60% of total). RESULTS: 2 main factors were found to underlie GP attitudes to the care of people with epilepsy and these demonstrated clustering within practices "epilepsy viewed as a primary care responsibility" (Eigenvalue 3.98, intra-class correlation coefficient (ICC) 0.40), and "medication skills"(Eigenvalue 2.74, ICC 0.35). GP-rated scores on "epilepsy care being a primary care responsibility" were a significant predictor of patient-rated quality of GP care (p = 0.031). Other contributory factors were seizure frequency (p = 0.044), and patient-rated "shared decision making" (p = 0.022). CONCLUSION: Specific general practitioner attitudes to the care of people with epilepsy cluster within practices and are significantly associated with patient-rated quality of epilepsy care. It is important to take these findings into consideration when planning primary care interventions to ensure people with epilepsy receive the benefits of available medical and surgical expertise.

Attitude of Health Personnel↗
PubMed2006

Reduction of inequalities in health: assessing evidence-based tools.

BACKGROUND: The reduction of health inequalities is a focus of many national and international health organisations. The need for pragmatic evidence-based approaches has led to the development of a number of evidence-based equity initiatives. This paper describes a new program that focuses upon evidence- based tools, which are useful for policy initiatives that reduce inequities. METHODS: This paper is based on a presentation that was given at the "Regional Consultation on Policy Tools: Equity in Population Health Reports," held in Toronto, Canada in June 2002. RESULTS: Five assessment tools were presented. 1. A database of systematic reviews on the effects of educational, legal, social, and health interventions to reduce unfair inequalities is being established through the Cochrane and Campbell Collaborations. 2 Decision aids and shared decision making can be facilitated in disadvantaged groups by 'health coaches' to help people become better decision makers, negotiators, and navigators of the health system; a pilot study in Chile has provided proof of this concept. 3. The CIET Cycle: Combining adapted cluster survey techniques with qualitative methods, CIET's population based applications support evidence-based decision making at local and national levels. The CIET map generates maps directly from survey or routine institutional data, to be used as evidence-based decisions aids. Complex data can be displayed attractively, providing an important tool for studying and comparing health indicators among and between different populations. 4. The Ottawa Equity Gauge is applying the Global Equity Gauge Alliance framework to an industrialised country setting. 5 The Needs-Based Health Assessment Toolkit, established to assemble information on which clinical and health policy decisions can be based, is being expanded to ensure a focus on distribution and average health indicators. CONCLUSION: Evidence-based planning tools have much to offer the goal of equitable health development.

Journal Article↗
PubMed2005

Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life.

Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients.

Ethics, Research↗
PubMed2005

Social class and access to specialist palliative care services.

OBJECTIVE: To determine any social class differences in place of death of cancer patients in South Bristol; to explore the experience of carers; and to identify inequalities in access to palliative care. DESIGN: Two-part study: (1) A cross-sectional survey of all 960 cancer deaths in South Bristol between September 1999 and December 2002. (2) A qualitative in-depth interview study of 18 carers of patients who died of cancer during the same period in South Bristol. Fourteen of those who died were from social class IIIM (manual), IV and V (i.e. lower social classes). MAIN OUTCOMES: Place of death of patients according to social class and geographical distance from the hospice. Carers' accounts of the way in which illness and death were conducted, and their response to the management of death and dying. RESULTS: The cross sectional survey showed that patients from social class V were less likely to die in the hospice. This finding was independent of geographical proximity. In the qualitative study, no class specific beliefs about death and dying were identified. Attitudes to the way dying should be conducted were common across the classes. Families expected to be present and centre stage at the time of death and for it to be conducted in a dignified and personal manner. Health care staff in all settings supported them in this aim. No one in this study died without a family member present. Some elderly carers were less open than younger carers in the way they talked about death and did not wish to be present at the death. Some carers from social class IV and V were less active in seeking information or asking for hospice admission than carers from other classes. Unrealistic expectations about the availability of hospice beds were common to all carers. Anxiety was common among carers. It was reduced by the provision of reliable and consistent healthcare support, by information provided in a timely and sensitive way, and by open and shared decision making between carer and patient. Most important in reducing anxiety was the support of a second carer who lived locally and was reliable. Carers from social classes IIIM (manual), IV and V were more likely to have this kind of support than carers from social classes I, II and IIIN (non-manual). CONCLUSION: Although cancer patients from social class V were less likely than others to die in the hospice, social inequality in access to or utilisation of healthcare in terminal illness was not prominent in carers' accounts. When it did arise, it was associated with passivity in seeking information and support on the part of some carers from social classes IV and V. Carers from social classes IIIM-V received more regular and reliable support from their families than those from social classes I-IIIN.

Aged↗