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PubMed2003

Conflicts of interest: experiences of close relatives of patients suffering from amyotrophic lateral sclerosis.

It is well known that close relatives of terminally ill patients endure great emotional stress. Many factors, such as existential concerns, contribute to the distress of these relatives. In this study, interviews were conducted to explore experiences concerning life restrictions, emotional distress, and limited support, in a group of close relatives of patients with amyotrophic lateral sclerosis (ALS). The purpose was to identify, illuminate and clarify ethical problems related to these experiences. The results indicate that close relatives of patients with ALS need someone to talk to, as well as more information about the disease and its process. Furthermore, the study illustrates how ethical problems are related to choices and conflicts, and that a process including shared decision making is often an ideal when trying to find a solution to ethical problems.

Adaptation, Psychological↗
PubMed2004

Crosscultural communication in those with airway diseases.

Transcultural consultations are becoming commonplace. Such consultations arise because patients from ethnic groups consult doctors, but also because patients consult doctors from other ethnic backgrounds. Such consultations require a cultural awareness and sensitivity which may be particularly necessary when concerning those with respiratory illnesses which are often long-term and about which there may be considerable stigma. The prevalence of respiratory disease can vary between ethnic groups, most noticeably in tuberculosis and smoking; and in diseases such as asthma, health service usage and treatment can vary significantly with ethnicity. Some of this may represent cultural, rather than disease specific differences. Good communication is essential throughout medical practice, but in transcultural consultations it is especially important that the doctor pays appropriate attention to likely patient beliefs and approaches to shared decision making. Usual negotiation regarding goals and outcomes first requires the clinician to understand how a patient's understanding of illness may vary from a traditional western scientific approach. Special attention needs to be paid to the optimal way of using interpreters and more time is often needed for crosscultural consultations. Specific training is necessary for health practitioners to enable them to acquire the skills for crosscultural care and this involves learning about other cultures and an appreciation of how a change in attitude often needs to be incorporated into the clinical approach. Acquiring these skills and understandings to facilitate optimal transcultural consultation enables transfer of these skills to other similar clinical scenarios such as the approach to those with disability. The global burden of long-term respiratory disease, both infectious and noncommunicable, coupled with increased migration and geographical mobility means that a successful crosscultural approach is now a priority area for attention.

Attitude of Health Personnel↗
PubMedDate not supplied

Handheld technology to improve patient care: evaluating a support system for preference-based care planning at the bedside.

OBJECTIVE: Despite an increasing movement toward shared decision making and the incorporation of patients' preferences into health care decision making, little research has been done on the development and evaluation of support systems that help clinicians elicit and integrate patients' preferences into patient care. This study evaluates nurses' use of CHOICE, a handheld-computer-based support system for preference-based care planning, which assists nurses in eliciting patients' preferences for functional performance at the bedside. Specifically, it evaluates the effects of system use on nurses' care priorities, preference achievement, and patients' satisfaction. DESIGN: Three-group sequential design with one intervention and two control groups (N=155). In the intervention group, nurses elicited patients' preferences for functional performance with the handheld-computer-based CHOICE application as part of their regular admission interview; preference information was added to patients' charts and used in subsequent care planning. RESULTS: Nurses' use of CHOICE made nursing care more consistent with patient preferences (F=11.4; P<0.001) and improved patients' preference achievement (F=4.9; P<0.05). Furthermore, higher consistency between patients' preferences and nurses' care priorities was associated with higher preference achievement (r=0.49; P<0.001). CONCLUSION: In this study, the use of a handheld-computer-based support system for preference-based care planning improved patient-centered care and patient outcomes. The technique has potential to be included in clinical practice as part of nurses' routine care planning.

Aged↗
PubMed1999

Decision analysis on alternative treatment strategies for favorable-prognosis, early-stage Hodgkin's disease.

PURPOSE: To compare the therapeutic outcomes of various treatment strategies in early-stage, favorable-prognosis Hodgkin's disease (HD) using methods of decision analysis. METHODS: We constructed a decision-analytic model to determine the life expectancy and quality-adjusted life expectancy for a hypothetical cohort of clinically or pathologically staged 25-year-old patients with early-stage, favorable-prognosis HD treated with varying degrees of initial therapy. Markov models were used to simulate the lifetime clinical course of patients, and baseline probability estimates were derived from published study results. RESULTS: Among patients with pathologic stage (PS) I to II, mantle and para-aortic (MPA) radiotherapy was favored over combined-modality therapy (CMT), mantle radiotherapy, and chemotherapy by 1.18, 1.33, and 1.55 years, respectively. For patients with clinical stage (CS) I to II, the treatment options of MPA-splenic radiotherapy, CMT, and chemotherapy yielded similar survival outcomes. Sensitivity analysis showed that the decision between CMT and MPA-splenic radiotherapy was highly influenced by the precise values of the estimates of treatment efficacy and long-term morbidity, the quality-of-life value assigned to the postsplenic irradiation state, and the time discount value used in the model. Probabilistic sensitivity analysis demonstrated that even if future studies doubled the precision of the estimates of the treatment-related variables, it would be impossible to demonstrate the superiority of one treatment over the other. CONCLUSION: Our model predicted that on average, MPA radiotherapy was clearly the preferred treatment for PS I to II patients. For CS I to II patients the treatment decision is a toss-up between MPA-splenic radiotherapy and CMT, emphasizing the importance of patient preference exploration and shared decision making between patient and physician when choosing between treatments.

Child↗
PubMed2001

Patient preference for cancer therapy: an overview of measurement approaches.

PURPOSE: In the era of evidence-based medicine and shared decision making, the formal assessment of patient preference for treatments or treatment outcomes has attracted much attention. In this article, the two most common approaches to the evaluation of preference, ie, utility assessment and probability trade-off assessment, are described. The purpose is to provide clinicians with the background knowledge needed to interpret preference studies published in the literature and to judge whether the reported findings are relevant to their own patients. METHODS: An overview is given of the methods used to assess utilities and probability trade-off scores. Evidence on determinants of such scores is presented. Examples from oncology are provided. Because experience with the treatment plays an important role as a determinant of preferences for both treatments and treatment outcomes, special attention is paid to the interpretation of studies in the light of subject selection. Directions for future research are suggested. CONCLUSION: The choice of approach and the measuring instrument depend on the goal of the preference assessment. Normal psychologic processes, such as coping, adaptation, and cognitive dissonance reduction, cause patients who are about to undergo a therapy or have experienced a therapy to rate it more favorably than other patients do. This should be remembered when using evidence from the literature to inform patients or for patient decision making.

Choice Behavior↗
PubMed2002

Costs of treatment for elderly women with early-stage breast cancer in fee-for-service settings.

PURPOSE: This study provides population-based estimates of the treatment costs for elderly women with early-stage breast cancer, with emphasis on costs of modified radical mastectomy (MRM) compared with breast-conserving surgery (BCS) and radiation therapy (RT). PATIENTS AND METHODS: Women with breast cancer from the Surveillance, Epidemiology, and End Results cancer registries were linked with their Medicare claims, 1990 through 1998. Each claim was assigned to an initial, continuing, or terminal care phase after a cancer diagnosis. Mean monthly phase-specific costs were determined for all health care and for treatment related only to cancer. Cumulative long-term costs of care that accrue during a women's remaining lifetime were calculated by treatment group. RESULTS: Initial care costs for the 6 months after diagnosis for women who underwent BCS with RT were approximately $450 per month higher than for women with MRM. During the continuing-care phase, costs for women undergoing BCS with RT were significantly less expensive than for MRM cases. The two groups had similar costs in the terminal-care phase. Assuming the same survival distributions, long-term costs for women undergoing BCS with RT were not statistically different than for women undergoing MRM. CONCLUSION: Although mastectomy was less costly in the initial phase, the lifetime costs of BCS with RT and mastectomy were equivalent. Thus, women's preferences, resources to cover out-of-pocket costs, and life situations should be the major factors addressed in shared decision making about treatment options.

Aged↗
PubMed2004

Breast cancer treatment in older women: does getting what you want improve your long-term body image and mental health?

PURPOSE: Little is known about the impact of surgical treatment on body image and health outcomes in older breast cancer patients. The purpose of this article is to evaluate whether concordance between treatment received and treatment preferences predicts posttreatment body image and whether body image, in turn, affects mental health in older women with breast cancer 2 years after treatment. PATIENTS AND METHODS: A longitudinal cohort of 563 women who were 67 years old or older and who had stages I and II breast cancer were surveyed by telephone at 3, 12, and 24 months after surgery. All women were clinically eligible for breast conservation. Body image was measured using questions adapted from the Cancer Rehabilitation Evaluation System-Short Form, and mental health was evaluated using a Medical Outcomes Study subscale. RESULTS: Body image was an important factor in treatment decisions for 31% of women. Women who received breast conservation had better body image 2 years after treatment than women who had mastectomies (P <.0001). Women who preferred breast conservation but received mastectomy had the poorest body image. Using generalized estimating equations, we found that body image, in turn, predicted 2-year mental health. CONCLUSION: Body image is important for many older women, and receiving treatment consistent with preferences about appearance was important in long-term mental health outcomes. Health professionals should elicit preferences about appearance from women and provide treatment choices in concordance with these preferences. Enhancing shared decision making has the potential to improve mental health in older breast cancer survivors.

Aged↗
PubMed2004

Patient-physician concordance: preferences, perceptions, and factors influencing the breast cancer surgical decision.

PURPOSE: This study explored patient preferences for involvement in the breast cancer treatment decision and concordance between patients' and physicians' views on decisional role. The impact of demographic and psychosocial characteristics on patients' decisional role was also examined. PATIENTS AND METHODS: Women with stage I or II breast cancer who were candidates for either mastectomy or lumpectomy were recruited from a university breast cancer treatment center. Patient interviews were obtained before meeting the surgical oncologist and again after the treatment decision was made but before surgical intervention. Clinician responses were obtained after the consultation. RESULTS: The 101 participants were generally white (97%), married (80%), and well-educated. They reported moderate levels of depression and anxiety but good social support and self-efficacy in communicating with their physician. Before the consultation, 47% of women reported a preference for shared decision making; afterwards, 61% felt they had primary responsibility for the decision. Only 38% of patients agreed with the physician's assessment of how the treatment decision was made. In regression analyses, higher education was significantly associated with patients' preferred level of control (P = .01). There was a trend toward women with greater self-efficacy desiring more active decisional roles (P = .08). Patient preference for decision making did not impact time in the patient-physician encounter, but more influence did increase satisfaction. CONCLUSION: Limited concordance between patient preference and patient perception and between patient and physician perception in how the treatment decision was made suggests the need for better communication between patient and clinician during a critical treatment encounter for breast cancer patients.

Aged↗
PubMed2005

Parent resistance to physicians' treatment recommendations: one resource for initiating a negotiation of the treatment decision.

This article examines pediatrician-parent interaction in the context of acute pediatric encounters for children with upper respiratory infections. Parents and physicians orient to treatment recommendations as normatively requiring parent acceptance for physicians to close the activity. Through acceptance, withholding of acceptance, or active resistance, parents have resources with which to negotiate for a treatment outcome that is in line with their own wants. This article offers evidence that even in acute care, shared decision making not only occurs but, through normative constraints, is mandated for parents and physicians to reach accord in the treatment decision.

Audiovisual Aids↗
PubMed2005

Teaching care management in a longitudinal primary care clerkship.

BACKGROUND: Harvard Medical School developed a longitudinal primary care clerkship as an opportunity to teach 7 themes of modern medicine: care over time, evidence-based medicine, prevention, uncertainty, cost effectiveness, teamwork, and shared decision making. PURPOSE: To evaluate the effectiveness of the longitudinal experience. METHODS: Students followed 1 patient throughout a 9-month clerkship and integrated the 7 themes into their management plans. We coded their written reports for number and duration of student-patient encounters; characteristics of students, preceptors, sites, and patients related to encounter frequency; and integration of themes into management plans. RESULTS: The median number of student-patient contacts was 4.0, as was the median number of months that students maintained contact with the patients. Patients with complex diagnoses were seen more times. No characteristics of patient, student, preceptor, or site limited the number or duration of contacts. Proportions of students integrating each theme into their plans ranged from 66% (care over time) to 11% (cost effectiveness). Those who had a greater number of patient contacts integrated more themes into their plans. CONCLUSIONS: Longitudinal relationships with patients can be achieved with a variety of patients and drive integration of some themes.

Adolescent↗
PubMedDate not supplied

Relationship quality of gay men in closed or open relationships.

This study compared gay men in monogamous ("closed") relationships (n = 98) and gay men in nonmonogamous ("open") relationships (n = 34). Partners in open relationships were living together significantly longer than partners in closed relationships. Partners in the two types of relationships did not differ in Psychological Adjustment. Controlling for length of time living together, partners in closed relationships reported higher Affiliation/Dependency, more Favorable Attitudes toward the Relationship, and lower Tension than partners in open relationships. Global relationship quality for both types of couples was related to many Attractions, many Barriers, and few Alternatives to the relationship; few beliefs regarding both Disagreement is Destructive and Partners Cannot Change; high Dyadic Attachment; high Shared Decision Making; and low Psychological Maladjustment. Partners in both types of relationships were more similar to each other than different from each other, especially on the variables of Relationship Quality, a belief in Partner Changeability, and Dyadic Attachment.

Adaptation, Psychological↗
PubMed2007

Using collaboration to maximize outcomes for a John A. Hartford Foundation geriatric enrichment project.

Two institutions representing two BSW and one MSW program and a geriatric education center collaborated in a John A. Hartford geriatric enrichment project. Sharing the risks and benefits of a collaborative model, 75 percent of faculty participated in mini faculty fellowships, and bi-monthly dinner meetings with colleagues from each of the three programs, and actively engaged in the curricula revisions. Faculty report pervasive geriatric enrichment in each program's foundation content areas, and increases in students placed in geriatric enriched field practicum settings, from pre-project levels of 8.1 percent to a high of 24 percent. The features of the collaborative project include: respecting each program's autonomy while actively sharing ideas, resources and partnering with community's aging experts; and strengthening mutually reciprocal relationships among faculty and the gerontologic practice community. This model of shared risks and benefits also provides opportunities for innovation, diverse thinking, and shared decision making.

Aged↗
PubMedDate not supplied

It Ain't Necessarily So: The Electronic Health Record And The Unlikely Prospect Of Reducing Health Care Costs.

Electronic health record (EHR) advocates argue that EHRs lead to reduced errors and reduced costs. Many reports suggest otherwise. The EHR often leads to higher billings and declines in provider productivity with no change in provider-to-patient ratios. Error reduction is inconsistent and has yet to be linked to savings or malpractice premiums. As interest in patient-centeredness, shared decision making, teaming, group visits, open access, and accountability grows, the EHR is better viewed as an insufficient yet necessary ingredient. Absent other fundamental interventions that alter medical practice, it is unlikely that the U.S. health care bill will decline as a result of the EHR alone.

Cost Savings↗
PubMed2004

Trends and geographic variations in major surgery for degenerative diseases of the hip, knee, and spine.

Although Medicare rates for surgery to treat degenerative diseases of the hip, knee, and spine are highly variable among hospital referral regions (HRRs), the relative risk for surgery within a region is constant from year to year-a large majority of the variation in surgery in 2000--01 is "explained" by the variation in rates in 1992--93. The within-region constancy in rates for highly variable procedures (the "surgical signature") is illustrated for South Florida HRRs. Involving the patient in choice of treatments (shared decision making) and outcomes research are promising strategies for reducing unwarranted regional variation and local constancy in surgery risk.

Florida↗
PubMedDate not supplied

Geography and the debate over Medicare reform.

Medicare spending varies more than twofold among regions, and the variations persist even after differences in health are corrected for. Higher levels of Medicare spending are due largely to increased use of "supply-sensitive" services--physician visits, specialist consultations, and hospitalizations, particularly for those with chronic illnesses or in their last six months of life. Also, higher spending does not result in more effective care, elevated rates of elective surgery, or better health outcomes. To improve the quality and efficiency of care, we propose a new approach to Medicare reform based on the principles of shared decision making and the promotion of centers of medical excellence. We suggest that our proposal be tested in a major demonstration project

Aged↗
PubMed2025

Primary Care Provider Perspectives on Expanded Genomic Screening in Children.

OBJECTIVES: Expanding pediatric genomic screening beyond current newborn screening presents both opportunities and challenges to primary care providers. We are developing a novel paradigm called Age-Based Genomic Screening (ABGS), which will incorporate targeted genomic sequencing for select, highly actionable genetic conditions into routine care at relevant time-points throughout childhood. We surveyed pediatric primary care providers in North Carolina to identify potential ABGS implementation determinants and strategies to address them. STUDY DESIGN: We disseminated an electronic survey to family medicine and pediatric primary care clinicians. Survey items were modeled on constructs previously identified as important to genomic medicine and assessed perceived utility, benefits, barriers, and facilitators of implementing targeted genomic screening in pediatric primary care. Data were analyzed using descriptive statistics and content analysis, as appropriate. RESULTS: A total of 93 individuals completed the survey. Over 85% of respondents agreed that genomic screening was important and impactful in their patient care but about 30% lacked confidence in their ability to implement it in their practice. The most cited benefits of the ABGS program were related to readiness for implementation and the evidence, strength, and quality of the intervention. The most concerning barriers included cost for patients and available resources, with 87% and 75% of respondents having extreme or moderate concern for these barriers, respectively. CONCLUSIONS: Our findings have implications both for the design of the ABGS pilot program and directions for future research in genomic implementation. In particular, the blueprint for the pilot program must include specific plans for ensuring primary care providers have the time and resources available for shared decision making with their patients about engaging in genomic screening.

Journal Article↗
PubMed2005

A comparative review of the options for treatment of erectile dysfunction: which treatment for which patient?

The field of erectile dysfunction (ED) has been revolutionised over the last two decades. Several treatment options are available today, most of which are associated with high efficacy rates and favourable safety profiles. A MEDLINE search was undertaken in order to evaluate all currently available data on treatment modalities for ED. Phosphodiesterase type 5 (PDE5) inhibitors (sildenafil, tadalafil, vardenafil) are currently the first-choice of most physicians and patients for the treatment of ED. PDE5 inhibitors have differences in their pharmacological profiles, the most obvious being the long duration of action of tadalafil, but there are no data supporting superiority for any one of them in terms of efficacy or safety. Sublingual apomorphine has limited efficacy compared with the PDE5 inhibitors, and its use is limited to patients with mild ED. Treatment failures with oral drugs may be due to medication, clinician and patient issues. The physician needs to address all of these issues in order to identify true treatment failures. Patients who are truly unresponsive to oral drugs may be offered other treatment options.Intracavernous injections of alprostadil alone, or in combination with other vasoactive agents (papaverine and phentolamine), remain an excellent treatment option, with proven efficacy and safety over time. Topical pharmacotherapy is appealing in nature, but currently available formulations have limited efficacy. Vacuum constriction devices may be offered mainly to elderly patients with occasional intercourse attempts, as younger patients show limited preference because of the unnatural erection that is associated with this treatment modality. Penile prostheses are generally the last treatment option offered, because of invasiveness, cost and non-reversibility; however, they are associated with high satisfaction rates in properly selected patients. All treatment options are associated with particular strengths and weaknesses. A patient-centred approach based on patient needs and expectations is necessary for the management of ED. The clinician must educate the patient and provide a supportive environment for shared decision making. The management strategy must be supplemented by careful follow-up in order to identify changes in patient health and relationship/emotional status that may necessitate treatment optimisation.

Administration, Oral↗
PubMed2003

Asthma and recreational SCUBA diving: a systematic review.

Asthma has traditionally been a contraindication to recreational self-contained underwater breathing apparatus (SCUBA) diving, although large numbers of patients with asthma partake in diving. The purpose of this paper is to review all the research relevant to the issue of the safety of asthma in divers. MEDLINE and MDConsult were searched for papers between 1980-2002. Keywords used for the search were 'asthma', 'SCUBA' and 'diving'. Additional references were reviewed from the bibliographies of received articles.A total of fifteen studies were identified as relevant to the area. These included three surveys of divers with asthma, four case series and eight mechanistic investigations of the effect of diving on pulmonary function. The survey data showed a high prevalence of asthma among recreational SCUBA divers, similar to the prevalence of asthma among the general population. There was some weak evidence for an increase in rates of decompression illness among divers with asthma. In healthy participants, wet hyperbaric chamber and open-water diving led to a decrease in forced vital capacity, forced expired volume over 1.0 second and mid-expiratory flow rates. In participants with asymptomatic respiratory atopy, diving caused a decrease in airway conductivity.There is some indication that asthmatics may be at increased risk of pulmonary barotrauma, but more research is necessary. Decisions regarding diving participation among asthmatics must be made on an individual basis involving the patient through informed, shared decision making.

Asthma↗