Preferences For Involvement In Decision Research Articles

Communication Between HIV Patients and Their Providers: A Qualitative Preference Match Analysis

Since the introduction of cART (combination antiretroviral therapy), HIV has evolved into a chronic disease such that it requires lifelong medical treatment to which patients must adhere. Communication with health care providers is pivotal in supporting patients to adapt to having HIV and adhering to treatment, in order to maintain health and quality of life. Previous research indicates that communication is optimal when it matches patient preferences for information exchange, relationship establishment, and involvement in treatment decisions. The aim of the present study is to explore HIV patient communication preferences as well as patient experiences with their providers (not) matching their preferences. A second aim is to explore provider beliefs about patient preferences and provider views on optimal communication. Data were collected through interviews with 28 patients and 11 providers from two academic hospitals. Results indicate that patient preferences reflect their cognitive, emotional, and practical needs such that patients look to increase their sense of control over their HIV. Patients aim to further increase their sense of control (by proxy) through their relationship with their providers and through their decisional involvement preferences. Providers are well aware of patient communication preferences but do not explicate underlying control needs. Implications for clinical practice are discussed.

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 patients at risk of cancer: the role of domain and numeracy.

Shared decision making has become an integral part of medical consultation. Research has, however, reported wide differences in individuals' desires to be involved in the decision-making process, and these differences in preferences are likely to be the result of a number of factors including age, education and numeracy. To investigate whether patients at genetic risk for cancer had preferences for shared decision making that differed depending on medical domain (general health vs. cancer) and whether decision preferences are linked to numeracy abilities. Four hundred and seventy-six women who consented to participate in response to an email sent by a local branch of the U.S.-based Cancer Genetics Network (CGN) to its members. Participants completed the Control Preference Scale, as well as an objective and subjective numeracy scales. Decision domain (cancer vs. general health) was not associated with women's preferences for involvement in decision making. Objective and subjective numeracy predicted a preference for decision involvement in general, and only objective numeracy was predictive with regard to cancer. Participants were equally likely to state they wanted to play an active, collaborative or passive role in both medical domains (general and cancer). High-numeracy participants were more likely to express a desire for an active role in general and in case they were diagnosed with cancer. Health authorities' recommendations to clinicians to include patients in their medical decisions are supported by patients' desires, and clinicians should be cognizant of their patients' preferences as well as their numeracy skills.

The Effect of Patient Involvement in Surgical Decision Making for Carpal Tunnel Release on Patient-Reported Outcome

To investigate whether patient-reported outcomes are different according to patients' preference or experience in surgical decision making for carpal tunnel release. We preoperatively surveyed 85 patients who underwent carpal tunnel release regarding their preferred role in the process of surgical decision making and assessed their experienced role in the actual decision making 6 months after surgery using a Control Preference Scale. For patient-reported surgical outcomes, we used the Disabilities of the Arm, Shoulder, and Hand questionnaire. We compared these outcomes with those of patients having different preferences or experiences in surgical decision making and also compared the outcomes according to whether the preferred roles match the experienced roles. The Disabilities of the Arm, Shoulder, and Hand scores were not significantly different between patients with different preferences for involvement in decision making for surgery or between those with different experiences in the actual decision making. However, those who experienced the same level of involvement as they had preferred were found to have better Disabilities of the Arm, Shoulder, and Hand scores than those who experienced a more active role or a more passive role than they had preferred. This study demonstrates that patient-reported outcomes were not different between those with different preferences or experiences in surgical decision making for carpal tunnel release. However, this study suggests that patients whose experience in decision making matched with their preference may have better subjective outcomes after carpal tunnel release. This suggests that patients with carpal tunnel syndrome may benefit from physicians' efforts of identifying patients' preferences for involvement in decision making and matching the identified preferences to the decision-making process. Prognostic II.

Satisfaction with treatment decision-making and treatment regret among Latinas and non-Latina whites with DCIS

ObjectiveTo examine differences in treatment decision-making participation, satisfaction, and regret among Latinas and non-Latina whites with DCIS. MethodsSurvey of Latina and non-Latina white women diagnosed with DCIS. We assessed women's preferences for involvement in decision-making, primary treatment decision maker, and participatory decision-making. We examined primary outcomes of satisfaction with treatment decision-making and treatment regret by ethnic-language group. ResultsAmong 745 participants (349 Latinas, 396 white) Spanish-speaking Latinas (SSL) had the highest mean preference for involvement in decision-making score and the lowest mean participatory decision-making score and were more likely to defer their final treatment decision to their physicians than English-speaking Latinas or whites (26%, 13%, 18%, p<0.05). SSLs reported lower satisfaction with treatment decision-making (OR 0.4; CI 95%, 0.2–0.8) and expressed more regret than whites (OR 6.2; CI 95%, 3.0–12.4). More participatory decision-making increased the odds of satisfaction (OR 1.5; CI 95%, 1.3–1.8) and decreased the odds of treatment regret (OR 0.8; CI 95%, 0.7–1.0), independent of ethnicity-language. ConclusionLanguage barriers impede the establishment of decision-making partnerships between Latinas and their physicians, and result in less satisfaction with the decision-making process and more treatment regret. Practice implicationsUse of professional interpreters may address communication-related disparities for these women.

Upper limb post-stroke sensory impairments: the survivor’s experience

Purpose: This study described stroke survivors’ experiences of upper limb post-stroke sensory impairment (ULPSSI) and its rehabilitation. Methods: A qualitative descriptive study of 15 stroke survivors with ULPSSI using semi-structured interviews. A focus group of eight survivors reviewed thematic outcomes. Analysis was completed by three authors. Results: Three themes emerged: (1) What happened to my hand?: A description of the significant impact of sensory impairments on survivors roles and participation; (2) I was only just getting started: Survivors felt sensory impairments and the upper limb were ignored in rehabilitation and described being left on their own to devise their own rehabilitation; and (3) If I work hard then maybe someday: Survivors felt sensory impairments recovered slowly and was aided by working towards recovery and maintaining hope. Conclusions: Sensory impairments are significant for survivors and are deserving of greater clinical and research attention. In particular, assessments and interventions need further development and testing. This study’s findings revealed the need to ascertain individual survivors’ preference for involvement in decision making related to their rehabilitation planning. It also found survivors view recovery as extending well beyond current rehabilitation frameworks, necessitating further description of recovery and re-evaluation of service delivery to address survivors’ needs.Implications for RehabilitationSensory impairments significantly impact stroke survivors’ roles and participation.Remediation of sensory impairments is important to survivors, but seems to be ignored in the rehabilitation process.Individual survivors’ preference for involvement in decision making related to their rehabilitation planning should be ascertained.Stroke survivors feel left on their own to address their upper limb impairments long after rehabilitation services have ended. The development of services beyond the normal rehabilitation timeframes is warranted.

The Prepared Patient: Information Seeking of Online Support Group Members Before Their Medical Appointments

The authors examined online support group members' reliance on their Internet community and other online and offline health resources as they prepare for a scheduled medical appointment. Adult members of an online support group (N = 505) with an upcoming medical appointment completed an online questionnaire that included measures of illness perceptions, control preference, trust in the physician, and eHealth literacy; a checklist of actions one could take to acquire health information; and demographic questions. A factor analysis identified 4 types of information seeking: reliance on the online support group, use of other online health resources, use of offline health resources, and personal network contacts. Previsit information seeking on the Internet was extensive and typically augmented with offline information. Use of online health resources was highest among those who believed they had control over their illness, who attributed many symptoms and negative emotions to it, and who were more eHealth literate. Reliance on the online support group was highest among those who believed they had personal control over their illness, expected their condition to persist, and attributed negative emotions to it. Trust in the physician and preferences for involvement in decision making were unrelated to online information seeking. Most respondents intended to ask their physician questions and request clinical resources based on online information.

Decision-Making about the HPV Vaccine among Ethnically Diverse Parents: Implications for Health Communications

Objective: To describe parents' knowledge, attitudes, and decision-making with regard to obtaining the HPV vaccine for their daughters. Methods: White, Black, and Hispanic parents of daughters who were age eligible to receive the HPV vaccine (9–17 years) were recruited from community settings to participate in focus groups. Parents were asked about knowledge and awareness of HPV, decision-making about HPV vaccine, as well as preferred and actual sources of HPV information. Results: Seven focus groups (n = 64 participants) were conducted. Groups were segmented by gender (women = 72%) and race/ethnicity (Black = 59%; White = 23%; Hispanic = 19%). Prevalent themes included: insufficient information to make informed decisions; varied preferences for involvement in decision-making; concerns about vaccine safety; mistrust of medical providers and pharmaceutical companies; and mismatch between actual and preferred sources of information. Discussion: Improving communication between providers and caregivers and helping parents to access information necessary for informed decision-making, while alleviating concerns about vaccine safety, may help to improve vaccine acceptance.

Preferences of Older and Younger Adults With Serious Mental Illness for Involvement in Decision-Making in Medical and Psychiatric Settings

There is a growing call for greater consumer participation in health care encounters. Prior research suggests that older age is associated with a greater preference for a more passive role in clinical decision-making, yet little is known about preferences for persons with mental illness. This pilot study compared preferences for involvement in decision-making between older and younger adults with serious mental illness. Cross-sectional observational survey. The authors surveyed 33 older adults (>or=50 years) and 32 younger adults (<50 years) with serious mental illness from two mental health center clinics and one residential facility for their preferences on decision-making with their psychiatrists and primary care providers. Measures included the Control Preferences Scale, the Autonomy Preference Index, and the Decision Self-Efficacy Scale. Contrary to our primary hypothesis, older adults reported a stronger desire for involvement in decision-making compared with younger adults. However, both age groups were similar in their desire for information to aid in decision-making. The majority in both age groups also preferred a collaborative role with a psychiatrist for medication decisions, an autonomous role for decisions related to psychosocial interventions, and a passive role with their primary care provider. Older and younger adults expressed similar decision self-efficacy. Our study suggests that older persons with serious mental illness have a stronger desire for involvement in decision-making than younger consumers. Additionally, role preference for involvement in decision-making varies across different clinical decisions and for psychopharmacological versus psychosocial interventions.

Acute Myocardial Infarction Patients' Information Needs Over the Course of Treatment and Recovery

Healthcare guidelines promote including patients in healthcare decision making to optimize treatment and recovery. However, prior research varies widely in the clinical context and conceptualization of patient involvement. The current study focuses on describing cardiac patients' preferences for involvement in decision making in the context of the myocardial infarction event continuum. Focus groups were conducted with 19 patients who had recently experienced a myocardial infarction and received care at a regional facility in the Midwest. Data were transcribed and analyzed qualitatively to identify themes related to patient's decision-making experiences. Both the role of the patient in decision making and information needs change as the patient progresses from the acute event to recovery. However, this change seems to be curvilinear, rather than linear. To maximize outcomes, clinicians must assess preferences and increase awareness of evolving information needs throughout the myocardial infarction clinical situation.

Can patients’ preferences for involvement in decision-making regarding the use of medicines be predicted?

Objective The current study aimed to develop a model of patients’ preferences for involvement in decision-making concerning the use of medicines for chronic conditions in the UK and test it in a large representative sample of patients with one of two clinical conditions. Methods Following a structured literature review, an instrument was developed which measured the variables that had been identified as predictors of patients’ preferences for involvement in decision making in previous research. Five hundred and sixteen patients with rheumatoid arthritis or type 2 diabetes were recruited from outpatient and primary care clinics and asked to complete the instrument. Results Multivariate analysis revealed that age, social class and clinical condition were associated with preferences for involvement in decision-making concerning the use of medicines for chronic illness but gender, ethnic group, concerns about medicines, beliefs about necessity of medicines, health status, quality of life and time since diagnosis were not. In total, the fitted model explained only 14% of the variance. Conclusion This study has demonstrated that current research does not provide a basis for predicting patients’ preferences for involvement in decision-making. Practice implications Building concordant relationships may depend on practitioners developing strategies to establish individuals’ preferences for involvement in decision-making as part of the ongoing prescriber-patient relationship.

Preferences for shared decision making in chronic pain patients compared with patients during a premedication visit

There is some evidence that patients' outcomes improve if they are involved in shared decision making (SDM). A chronic pain clinic or premedication visit could be adequate settings for the implementation of SDM. So far, the patients' preference for involvement in decision making and their desire for information have not been tested in anesthesiological settings. A group of chronic pain patients was compared with a group of patients in the premedication visit with respect to SDM, the desire for information and perceived involvement in care. The autonomy preference index (API, measuring preference for involvement and desire for information) and the perceived involvement in care scale (PICS, measuring patients' perception of easier involvement by doctors and information exchange) were administered. In total, 190 chronic pain patients and 151 patients of premedication were included in this study. Patient of the premedication visit had significantly higher SDM scores. Desire for information was high, but there were no differences between groups. Younger patients [B (estimate) =- 0.3; 95% CI (-0.4) - (-0.1)], women (B = 10.9; 95% CI 6.3-15.4) and patients with higher educational level (B = 10.1; 95% CI 5.6-14.6) had more desire for SDM. PICS scores were basically influenced by groups: chronic pain patients felt more facilitated by doctors [B =- 0.185; 95% CI (-0.4) - (-0.1)] and had more information exchange [B =- 19.5; 95% CI (-15.8) - (-2.4)] than patients in the premedication visit. In both anesthesiological settings, the desire for information was high, but patients in the premedication visit had higher SDM scores, especially young female patients with higher educational level. Real patient-physician interaction showed that premedication patients felt less involved by doctors and had less information exchange compared with the chronic pain patients. Therefore, premedication visits should be focussed more on adequate information exchange and involvement of the patient in the shared decision making process.

Treatment decision-making preferences in older patients with metastatic colorectal cancer

8519 Background: Shared decision-making is a tenet of contemporary oncology practice. However, it is uncertain how involved elderly patients want to be in making treatment decisions and how physicians perceive patient preferences for involvement in decision-making. Methods: In structured interviews about multiple facets of chemotherapy treatment decision-making, we asked patients age 70 and older seen at our specialty cancer center with a recent diagnosis of metastatic colorectal cancer (CRC) about their preferences for making treatment decisions. We used Degner’s control preference scale to measure patient preference for decision control. Treating oncologists described their perception of each patient’s preference for decision control using the same scale. Control preference was assessed in relation to socio-demographic characteristics and functional status. Results: Of 52 patients interviewed, the mean age was 76 years (range 70–89), 52% were male, 60% were educated beyond high school and 25% required some help with activities of daily living (ADL). Preferences for involvement in treatment decision-making demonstrated marked variation (Table). Compared with female patients, males expressed a stronger preference for decision control (p&lt;0.05). Preference for decision control was somewhat greater in patients under age 80, those with more education, and those with no ADL impairment, but these associations were not statistically significant. In 26% of cases, the treating physician’s perception and the patient’s expressed preference for decision control were concordant. Conclusions: In older patients with advanced CRC, preference for control in treatment decision-making shows marked heterogeneity and some correlation with socio-demographic characteristics and functional status. Physicians’ perceptions of patient preference for decision control are often inconsistent with patients’ actual preferences. [Table: see text] No significant financial relationships to disclose.

Preferences for involvement in medical decision making: Comparing British and German views

Despite beneficial outcomes of patients' involvement in medical decision processes, it has been claimed that patients are generally not interested in medical decision making (MDM). Whereas current research focuses on actual MDM, this research explored the impact of nationality and perceptual processes of MDM. Preferences for involvement in decision making were examined in a sample of 204 German and 143 British university students. Hierarchical multiple regressions were employed to explore the link between socio-demographic information, individuals' perceived relationship with their GP, Health Locus of Control – Powerful Others, perceptions regarding the frequency and sufficiency of information provision and involvement in MDM, and individuals' preferred level of involvement and information. A significant amount of the variance in individuals preferences for involvement could be explained (Adjusted R 2 = .59, p < .001). Independent t-test analyses showed that British and German perceptions of care differed significantly on a variety of different measures. Separate analyses for the German and British group highlighted cross-national differences in care and preferences for involvement. The study suggests that preferences to become involved might depend more on perceptual processes than actual involvement in decision making, and that communication and national health policy could play an important role.

Hospital patients' preferences for involvement in decision-making. A questionnaire survey of 1040 patients from a Swiss university hospital.

Assessing patients' preferences for shared decision-making and receiving information. Cross-sectional cohort study. University Hospital in Northwest Switzerland. 1825 in-patients (mean age: 58 years, 48.7% female) were asked to participate, 1040 patients responded (59%). Proportion of positive answers to two questions depicting typical elements of shared decision-making plus a question asking for patients' information needs. These questions were embedded in a questionnaire sent to patients two weeks after discharge from the hospital, asking for perceived deficits during their hospital stay and socio-demographic characteristics. 779/947 (79.1%) agreed to the statement: "One should stick to the physician's advice even if one is not fully convinced of his ideas". 620/945 (65.6%) agreed to the statement: "It should completely be left to physicians to decide on a patient's treatment." 914/952 (96%) agreed to the statement: "Even when the news is bad the patient must be informed." Older patients and less educated patients are more likely to agree with the first two statements, patients with a non-Swiss cultural background favour the information needs statement slightly less than other patients (92.4 vs 96.7% agreement). The severity of illness had no influence on agreeing or not. However, patients who disagreed on any statement were more likely to report a lack of information from the hospital. A substantial number of patients in this study wanted the physician to take medical decisions. Yet, almost all patients wanted honest information about their health status. Health professionals have to find out to what extent an individual patient wants to be involved in decision-making.

E-5. Encouraging informed patients: Towards joint decision making

E-5. Encouraging informed patients: Towards joint decision making

Beliefs and expectations of women under 50 years old regarding screening mammography: a qualitative study.

Because shared decision making has been recommended for screening mammography by women under age 50, we studied women's decision-making process regarding the procedure. Qualitative research design using in-depth semi-structured interviews. Sixteen white and African-American women aged 38 to 45 receiving care at a large New England medical practice. We identified the following content areas in women's decision-making process: intentions for screening, motivating factors to undergo screening, attitudes toward screening mammography, attitudes toward breast cancer, and preferences for information and shared decision making. In our sample, all women had or intended to have a screening mammogram before age 50. They were motivated by the awareness of the recommendation to begin screening at age 40, knowing others with breast cancer, and a sense of personal responsibility for their health. Participants feared breast cancer and thought the benefits of screening mammography far outweighed its risks. Women's preferences for involvement in decision making varied from wanting full responsibility for screening decisions to deferring to their medical providers. All preferred the primary care provider to be the main source of information, yet the participants stated that their own providers played a limited role in educating them about the risks and benefits of screening and the mammography procedure itself. Most of their information was derived from the media. The women in this study demonstrated little ambivalence in their desire for mammography screening prior to age 50. They reported minimal communication with their medical providers about the risks and benefits of screening. Better information flow regarding mammography screening is necessary. Given the lack of uncertainty among women's perceptions regarding screening mammography, shared decision making in this area may be difficult to achieve.

Do patients wish to be involved in decision making in the consultation? A cross sectional survey with video vignettes

Objective: To determine patients' preferences for a shared or directed style of consultation in the decision making part of the general practice consultation.Design: Structured interview, with video vignettes of acted...

Decision-making preference and opportunity in VA ambulatory care patients: association with patient satisfaction.

Using data from the Veterans Health Study, associations were examined for decision-making preference, decision-making opportunity, and satisfaction with medical care among a sample of 266 men who use Department of Veterans Affairs (VA) ambulatory health care services. Results indicated that veterans with a high preference for involvement in decision-making and low provider-offered decision-making opportunities had significantly lower satisfaction with medical care compared to veterans with either low preference for decision-making involvement with high or low opportunity, or those with a high decision-making preference and high decision-making opportunity. The findings suggest that health care providers may increase patient satisfaction with medical care by providing opportunities for decision-making to patients who prefer involvement in their health care decision-making. Provider strategies for increasing patient decision-making involvement are discussed.

Through the patient's eyes: Strategies toward more successful contraception

To review the literature focusing on studies of patient satisfaction and patient involvement in the design of care and to suggest strategies for involving patients effectively in their care. While addressing issues in contraception and adherence to contraceptive regimens, we write from the perspective of general physicians who manage patients with a broad variety of problems. By learning systematically what patients want, need, and experience in health and illness, we can use such information in the redesign and improvement of care. Individual anecdote, focus groups of patients, patient survey data, and a literature review were used. The literature review used an English-language search of MEDLINE from 1970 to 1996, with search terms including patient satisfaction, consumer participation, patient participation, self-care, contraception, and contraceptive behavior. Previous studies conducted by the authors were also reviewed. Patients report that providers who solicit patients needs and preferences for involvement in decision making, who encourage family involvement, and who tailor educational efforts to the individual adult learning style of the patient engender greater patient satisfaction, adherence to recommended therapies, and improved patient outcomes. Recent trends in the United States, such as the growing use of alternative therapies, the self-help movement, and consumerism have influenced patient attitudes and behaviors toward seeking care and are changing their behavior. We discuss several strategies to improve patient involvement in their care, including the use of patient diaries and contracts, pre- and post-visit preparation and communication, the involvement of patients in educating providers, and the use of information technologies to enhance communication between patients and providers. Patient involvement in the redesign of care may help promote greater effectiveness of contraceptive strategies.