Active Role In Decision Research Articles

Improving comprehension of informed consent

Objective To explore the way the doctor–patient communication process may be improved by adopting the patients’ conversational style in the development of written materials for surgical patients. Methods Written information prepared by doctors, specialists in abdominal surgery, was tested for comprehension on patients undergoing cholecystectomy, using the standard Cloze test procedure. At the same time, the patients were asked to describe in their own words all they knew about their illness and the treatment. The collected 150 patient narratives were analyzed, and a typical narrative for each educational level was selected based on average SMOG score, word count and sentence length. The patient-worded information was then tested for comprehension on new patients, selected from primary health care, using the same Cloze procedure as with doctor-developed information. Patient profile of best lay communicators was defined using also sociodemographic characteristics, and reported information seeking and decision making preferences. Results Only 50% of patients completed Cloze test, of which over 40% showed poor comprehension. Analysis of transcribed narratives collected from 150 patients showed increasing complexity of style by educational level (average SMOG score 7, 8, and 9; sentence length 11, 13, and 15 words; for low, medium, and high educational level, respectively). Cloze tests based on typical narratives, and tested on primary care patients, indicated to the style best understood by all. Dominant characteristics of patients producing a narrative of similar style to the best-understood narrative were observed: medium educational level, women over 60, urban workers, interviewed after surgery, informed by specialist at ultrasound, knowledge about illness from 1 to 10 years, learned most about illness from lay people, those who wanted more information in both oral and written form, and preferred active role in decision making. Conclusion Analysis of patient profiles with typical narratives that were best understood by other patients shows where to look for lay experts in doctor–patient communication. Practice Implications Obtained findings indicate to the importance of patient participation in developing informed consent information, and to the possible method for improving comprehension of educational patient materials in general.

Long-Term Care Planning Study: Strengths and Learning Needs of Nursing Staff

This planning study was designed and conducted in a predominantly rural Canadian province to examine the strengths and learning needs of four categories of nursing staff practising in New Brunswick nursing homes. Participants included directors of care, registered nurses, licensed practical nurses, and resident attendants. The nursing homes ranged in size from 38 to 196 beds and were located throughout the province. In health and planning studies, ethnography conveys a coherent statement of peoples' local knowledge as culture-sharing groups (Muecke, 1994). The study derived information from the Nursing Home Act, reports, the literature, key informants, and direct observations of and interviews with participants. Leadership strengths defined the roles for categories of staff and supported the capacity of each category to identify their learning needs. In conclusion, nurses practising in nursing homes can and must take an active role in decision making for their learning.

Pediatric Palliative Care: Relationships Matter and So Does Pain Control

More than 50,000 children die each year in the United States, and hundreds of thousands more struggle with the challenges of a life-threatening condition. Much about their tragic circumstances is beyond medicine’s control. Nevertheless, three articles in this issue provide new insights into the needs of these children and their parents. Careful reading of these studies suggests concrete steps committed clinicians can take to help meet those needs. A theme across all three studies is clear: relationships matter. In addition, two of the studies bring attention to the continuing problem of unrelieved pain near the end of life. Because modern medicine does have the technical means to reduce nearly all pain, it can be argued that the failure to do so is not a technical failing but rather a symptom of insufficient commitment. Viewed this way, all three articles underscore the centrality of nonabandonment. They underscore the importance of staying connected with patients and families and providing the best that medicine can offer, including both human contact and palliative interventions like optimal pain medication, even and especially when death is imminent. Hinds et al surveyed pediatric patients with advanced cancer, who were aged 10 to 20 years old, within 7 days of participating in one of following three end-of-life decisions: whether to enroll in a phase I trial, whether to institute a do not resuscitate order, and whether to forego life-sustaining technologies in favor of palliative care measures only. They found that these children and adolescents realized they were involved in an end-of-life decision, understood the consequences of their decision (that death is the outcome no matter what and that a phase I trial brings personal hazards but may help others), and could share the reasons for their preferences. In short, Hinds et al demonstrate that older children and particularly adolescents have sufficient cognitive ability to warrant an active role in decision making about their care. Moreover, both children and adolescents were influenced by their concern about others. Sometimes, this manifested as concern to act in ways that would make their parents happy (for example, by enrolling in the phase I trial even when they did not wish to). However, both children and their parents were also often motivated out of concern for others not personally known to them. The authors report this altruistic stance toward strangers as surprising because at least one study has documented that altruism is not a major motivator of phase I trial enrollment for adults, and they speculate that such altruism among the young people they surveyed may be part of the maturational effect of a life-ending illness on a child or adolescent. It also strikes us that altruism may be more important among gravely ill children and their parents than among adults near the end of life because of the desire to see some good arise in the context of such great despair. The poignancy of a young life cutoff so prematurely may provide a context in which both the children and their parents seek a way to make something good happen in an otherwise deeply tragic situation. There are studies documenting that, after death, parents have found meaning and solace in the opportunity to donate their children’s organs. There may be a similar underlying urge, even among the children themselves, to choose actions before death that will enable them to make a positive contribution to others as part of their legacy. These explanations are only speculative but are worthy of further exploration in future research. Mack et al surveyed parents of children who had died of cancer and their oncologists to ascertain parents’ and physicians’ assessments of the quality of care the children had received. A full 82% of the parents felt that the quality of physician care at the end of life was excellent or very good. However, the better the communication between physicians and parents, the greater was the parental assessment of JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 23 NUMBER 36 DECEMBER 2

The development of the US and Australian dietary supplement regulations: What are the implications for product quality?

The widespread utilisation of vitamin, mineral, herbal and other natural products by the community attests to the importance individuals place on taking an active role in decisions about their health and the types of medicines they take. Since the emergence of these products in the 1950s, the public have strenuously campaigned against efforts by the authorities to restrict consumer access to these products. In the US and Australia, these public protests had a major impact on the development of the legislative framework that currently governs the regulation of these items in these countries. This article examines the role the public played in establishing these regulations and evaluates the quality of the products that have emerged under the direction of the US and Australian regulations.

Not all patients want to participate in decision making. A national study of public preferences.

The Institute of Medicine calls for physicians to engage patients in making clinical decisions, but not every patient may want the same level of participation. 1) To assess public preferences for participation in decision making in a representative sample of the U.S. population. 2) To understand how demographic variables and health status influence people's preferences for participation in decision making. A population-based survey of a fully representative sample of English-speaking adults was conducted in concert with the 2002 General Social Survey (N= 2,765). Respondents expressed preferences ranging from patient-directed to physician-directed styles on each of 3 aspects of decision making (seeking information, discussing options, making the final decision). Logistic regression was used to assess the relationships of demographic variables and health status to preferences. Nearly all respondents (96%) preferred to be offered choices and to be asked their opinions. In contrast, half of the respondents (52%) preferred to leave final decisions to their physicians and 44% preferred to rely on physicians for medical knowledge rather than seeking out information themselves. Women, more educated, and healthier people were more likely to prefer an active role in decision making. African-American and Hispanic respondents were more likely to prefer that physicians make the decisions. Preferences for an active role increased with age up to 45 years, but then declined. This population-based study demonstrates that people vary substantially in their preferences for participation in decision making. Physicians and health care organizations should not assume that patients wish to participate in clinical decision making, but must assess individual patient preferences and tailor care accordingly.

Patients' preferences for involvement in clinical decision-making within secondary care and the factors that influence their preferences

The research aimed to identify what involvement patients want in clinical decision-making and explore the underlying factors influencing that choice, thus identifying aids and barriers to increasing patients' involvement in decision-making. The study design was inspired by interpretative phenomenology, thus the framework for analysis is intended to aid interpretation and comprehension of the patients' experiences and understanding through identifying similarities and differences in their stories. Data were collected through semi-structured interviews of twenty people who were patients in a secondary care milieu at the time of interview. Results showed that, 20% of patients chose an active role in decision-making and 80% chose a collaborative or a passive role. However what people selected on the autonomy preference index was not always reflected in the interview. Additionally, the findings suggest that the NHS maintains a paternalistic approach. Lack of staff, lack of information and poor continuity of care with nursing staff made patients feel disempowered.

Corporate real estate: Is treasury ready?

Corporate real estate is becoming an emerging priorityfor treasury departments. That's because real estate—traditionally an operational consideration-—is becoming a strategic issue. Treasury must play more of an active role in decision making here. But are treasury departments ready and equipped to deal with these new demands? And where is the strategic opportunity? © 2005 Wiley Periodicals, Inc.

Critique of the American Cancer Society Guidelines for Breast Cancer Screening: Update 2003.

The American Cancer Society Guidelines for Breast Cancer Screening: Update 2003 was obtained through the National Guideline Clearinghouse Web site and was critiqued for potential incorporation into practice. The updated guidelines address screening mammography, physical examination, and new technologies and describe how these may be applied to women at average risk, women at high risk, and older women. The new guidelines emphasize educating women and having them take a more active role in decision making.

Elderly cancer patient's desire for information about disease and treatment options

8242 Purpose : Old patients are one of groups at risk in terms of receiving inadequate information. Clear information is determinant in the acceptance of the cancer treatment options. The present study examines the needs of elderly cancer patients (pts) to receive accurate information regarding disease and treatment outcome in a sociocultural contest where the care-givers (a family member, in the most of the cases) usually have a prevalent role in the relationship with the physician. Methods: Forty elderly cancer pts aged ≥ 70 years (mean 75), from a single outpatient clinic, were interviewed; all the pts were treated with chemotherapy; 53% were female and 47% male; 67% were married, 25% widows, and 8% never married; 25% were affected by breast cancer, 27.5% by gastrointestinal cancer, 20% by lung cancer, and 12.5% by others types. Pts were asked their perception of disease and interviewed about the information received regarding the disease, the treatment toxicity, and the need to receive more information. To evaluate their cognitive state, the Mini Mental State Examination (MMSE) was administered and the results were corrected for age and education level. Results: in 50% of pts the MMSE score was > 24; during the interview 35 (85%) pts pronounced the word “cancer” while the remainders use only the word “disease”. Regarding the information about the disease, 40% reported the desire of more information, while 20% were doubtful. Forty-five per cent express the desire of more and accurate information about the toxicity of the treatment while 15% were doubtful. Interesting, all most of the uncertainties patients were the same that never pronounced the word cancer, that is those that are not conscious of their cancer disease. Conclusions: the results of this study showed that (a) elderly cancer patient, living in south Europe, wish to be informed about the disease; (b) the awareness of the correct diagnosis of the disease influence the patients needs about the potential treatment side effects and their desire to have an active decision-making role in terms of therapeutic options; finally, they maybe indicate (c) the patients' desire of a better patient-physician relationship. No significant financial relationships to disclose.

Elderly cancer patient's desire for information about disease and treatment options

8242 Purpose : Old patients are one of groups at risk in terms of receiving inadequate information. Clear information is determinant in the acceptance of the cancer treatment options. The present study examines the needs of elderly cancer patients (pts) to receive accurate information regarding disease and treatment outcome in a sociocultural contest where the care-givers (a family member, in the most of the cases) usually have a prevalent role in the relationship with the physician. Methods: Forty elderly cancer pts aged ≥ 70 years (mean 75), from a single outpatient clinic, were interviewed; all the pts were treated with chemotherapy; 53% were female and 47% male; 67% were married, 25% widows, and 8% never married; 25% were affected by breast cancer, 27.5% by gastrointestinal cancer, 20% by lung cancer, and 12.5% by others types. Pts were asked their perception of disease and interviewed about the information received regarding the disease, the treatment toxicity, and the need to receive more information. To evaluate their cognitive state, the Mini Mental State Examination (MMSE) was administered and the results were corrected for age and education level. Results: in 50% of pts the MMSE score was > 24; during the interview 35 (85%) pts pronounced the word “cancer” while the remainders use only the word “disease”. Regarding the information about the disease, 40% reported the desire of more information, while 20% were doubtful. Forty-five per cent express the desire of more and accurate information about the toxicity of the treatment while 15% were doubtful. Interesting, all most of the uncertainties patients were the same that never pronounced the word cancer, that is those that are not conscious of their cancer disease. Conclusions: the results of this study showed that (a) elderly cancer patient, living in south Europe, wish to be informed about the disease; (b) the awareness of the correct diagnosis of the disease influence the patients needs about the potential treatment side effects and their desire to have an active decision-making role in terms of therapeutic options; finally, they maybe indicate (c) the patients' desire of a better patient-physician relationship. No significant financial relationships to disclose.

Decision-Making Role Preferences of Patients Receiving Adjuvant Cancer Treatment: A University of Rochester Cancer Center Community Clinical Oncology Program

This study examined patients' preferences for involvement in treatment decision-making. This was a multisite survey study of 1014 patients diagnosed with a variety of cancers. Patients' treatment decisions, role preferences, and characteristics were assessed with a questionnaire administered at the time of their first visit with a medical or radiation oncologist. The data showed that 35.7% preferred passive roles, 43.7% preferred shared roles, and 20.3% preferred active roles in decision-making. Bivariate analyses indicated that patients with a college education or in professional or managerial occupations preferred more active roles in decisionmaking compared with other patients. Similarly, men with prostate cancer and women with breast cancer, compared with other patients, also preferred more involvement in decision-making. Age was not associated with decision-making role preferences. Avoidant and fatalistic coping were associated with a passive decision-making role. Multinomial logistic regression analysis found that patients in professional/managerial occupations preferred a shared role (odds ratio [OR], 1.6; CI, 1.2–2.4) or an active role (OR, 2.3; CI, 1.5–3.5) compared with patients in other occupations. Patients with prostate or breast cancer preferred shared (OR, 2.3; CI, 1.6–3.2) or active roles (OR, 1.8; CI, 1.2–2.8) compared with patients with other diagnoses. Patients who scored higher on the Mental Adjustment to Cancer fatalism scale were less likely to prefer shared (OR, 0.94; CI, 0.89–0.99) or active roles (OR, 0.90; CI, 0.84–0.96) compared with patients with a less fatalistic orientation. Decision-making role preferences were influenced by multiple factors. Most patients wanted a shared or active role in treatment decision-making. Our results suggest that some patients may require encouragement to take a shared or active role in decision-making.

Unsatisfied basic needs of older patients in emergency care environments - obstacles to an active role in decision making.

Little attention is paid in Emergency Care Units (ECUs) in Sweden to the special needs of older people. The aim of this study was thus to analyse older people's basic needs in the emergency care environment. The study was carried out with a life-world interpretative approach, and the theoretical framework for interpretation was Abraham Maslow's theory of motivation and personality. Seven informants aged between 65 and 88 years, with various experiences of being patients with urgent as well as non-urgent health-related problems, were interviewed about their experiences of ECU care. Their basic needs at the lower levels of Maslow's hierarchy were well-represented in the data. Higher needs, such as desire to know and understand, appeared to be totally neglected. Safety needs dominated the whole situation. Our conclusion is that standards of care must be developed in Sweden to make older patients feel safer and more secure in ECUs. Furthermore, the principles of nursing care for older patients need to be defined in order to encourage them to take an active part in their own health process.

Medical tests: women's reported and preferred decision-making roles and preferences for information on benefits, side-effects and false results.

To determine women's preferences for and reported experience with medical test decision-making. Computer-assisted telephone survey. Six hundred and fifty-two women resident in households randomly selected from the New South Wales electronic white pages. Reported and preferred test and treatment (for comparison) decision-making, satisfaction with and anxiety about information on false results and side-effects; and effect of anxiety on desire for such information. Overall most women preferred to share test (94.6%) and treatment (91.2%) decision-making equally with their doctor, or to take a more active role, with only 5.4-8.9% reporting they wanted the doctor to make these decisions on their behalf. This pattern was consistent across all age groups. In general, women reported experiencing a decision-making role that was consistent with their preference. Women who had a usual doctor were more likely to report experiencing an active role in decision-making. More women reported receiving as much information as they wanted about the benefits of tests and treatment than about the side-effects of tests and treatment. Most women wanted information about the possibility of false test results (91.5%) and test side-effects (95.6%), but many reported the doctor never provided this information (false results = 40.0% and side-effects = 31.3%). A substantial proportion said this information would make them anxious (false results = 56.6% and side-effects = 43.1%), but reported they wanted the information anyway (false results = 77.6% and side-effects = 88.1%). Women prefer an active role in test and treatment decision-making. Many women reported receiving inadequate information. If so, this may jeopardize informed decision-making.

Information within optometric practice: comprehension, preferences and implications.

The partnership approach to health care, in which patients take an active role in decision making, can potentially improve patient satisfaction and adherence to clinician recommendations. However, the process can be impeded by insufficient or poor-quality information provision. This study explored participants' understanding of, and requirements for, optometric information. Information leaflets were obtained from 12 optometry practices and four internet-based resources. Sixty-four patients/ clients participated in focus groups that explored: (1) their understanding of diagrams of visual function, (2) perceptions of good information, (3) information requirements and (4) perceptions of the effects of improved information. A theory-led thematic analysis identified three major themes within each of the four categories. The use of jargon and the inappropriate layout of diagrams and text impeded comprehension of the leaflets. High-quality information was defined as being written concisely with simple explanations and clear diagrams. There was also a preference for information to be relevant and applicable to the patient's own eye care needs. In addition, participants expressed a desire for both written and verbal information regarding eye examination procedures and interpretation of prescriptions. Advice regarding eye care was also requested. To facilitate a partnership approach and improve patient satisfaction, patients should be provided with jargon-free concisely written and clearly presented information. In addition to general information, patients would also benefit from personalised information regarding test results and eyecare regimes.

Randomized clinical trials in oncology: understanding and attitudes predict willingness to participate.

To explore the association at different time points in the trajectory of breast cancer care, between anxiety, knowledge, and attitudes, on women's willingness to participate in randomized clinical trials. A cross-sectional survey was undertaken among women attending a breast clinic for screening mammography or diagnostic assessment plus women with newly diagnosed breast cancer to assess attitudes toward and willingness to participate in randomized clinical trials of breast cancer treatment. Five hundred forty-five women completed questionnaires assessing knowledge of and attitudes toward randomized clinical trials. The mean age of respondents was 48.9 years (SD, 11.3 years). Thirty-three percent of women would consider participating in a clinical trial if they had breast cancer. Women with breast cancer (31%) were significantly more likely to decline to participate than women attending for screening mammography (15%) or diagnostic assessment (15%, P =.0002). Women who might consider participating in a randomized clinical trial were more knowledgeable about randomized trials (mean difference, 0.7; 95% confidence interval [CI], 0.2 to 1.2; P =.003). In a multivariate analysis, women who would consider participating in a randomized trial were younger (odds ratio [OR], 0.96; 95% CI, 0.93 to 0.99), more likely to want an active role in decision-making (OR, 3.2; 95% CI, 1.3 to 7.6), and reported a greater impact from the positive aspects of clinical trials (OR, 2.2; 95% CI, 1.3 to 3.8) and less impact from the negative aspects of clinical trials (OR, 2.2; 95% CI, 1.3 to 3.2). These findings suggest that women who have a better understanding of issues about clinical trials have more favorable attitudes toward randomized trials and are more willing to consider participation in a clinical trial.

Parents' preferences for participation in decisions made regarding their child's anaesthetic care.

The traditional paternalistic approach to medical decision-making is moving towards a climate of greater patient and/or surrogate involvement. Despite this, there is considerable debate regarding patient preferences for participation in medical decision-making and its effect on patient satisfaction and outcome. This study was designed to examine parents' preferences for participation in decisions regarding their child's anaesthetic care and to determine if active participation is associated with greater parental satisfaction. Three hundred and eight parents of children scheduled to undergo elective surgical procedures were asked to complete a questionnaire detailing information regarding their preferences for participation in decisions made regarding their child's anaesthetic care. Parents were classified as being passive, shared, or active decision makers. Overall, parents evidenced a preference for shared decision-making with the anaesthetist. Parents preferred to be passive with respect to intraoperative pain management but active with respect to their presence when their child wakes up. There were no differences between active, shared and passive decision-makers with respect to their satisfaction with anaesthetic care and their participation in decision-making. However, 32.1% of parents stated that they would have preferred more involvement in decision-making. These parents were significantly less satisfied with their child's care than those who felt that their participation had been adequate. This study highlights specific areas in which parents would prefer a more active role in decision-making and, as such, may serve to focus anaesthetists' efforts to educate parents with respect to the various options available for their child's care.

To Use or Not to Use: Male Partners' Perspectives on Decision Making About Prenatal Diagnosis

We conducted an exploratory, qualitative pilot study investigating the use of genetic counseling and prenatal genetic technologies between women and their male partners for two referral groups: pregnant women 35 years of age and over (AMA) at the time of delivery and pregnant women with an abnormal maternal serum triple screen (MSAFP3). The convenience sample consisted of 25 semistructured interviews and 50 observations of genetic counseling sessions. Male partners' styles of decision making and the way they viewed prenatal diagnosis decision making were examined. We defined three decision-making styles based on our interpretation of the data: (1) domain, (2) joint-delegated, and (3) saliency. The male partners also seemed to view prenatal diagnosis as either an information decision or an action decision and appeared to take a more active role in decision making when the decision was viewed as an action decision.

Clinical Dietitians’ Perceptions of Ethical Decisions

A study was conducted to identify ethical dilemmas dietitians face in the use of nutrition support, describe the factors that enter into ethical decision making, and determine what resources dietitians use when making ethical decisions. The authors developed a four-part questionnaire based on ethical dilemmas described in the literature and corresponding to the purposes of the study. The questionnaire was mailed to 348 clinical dietitians; 135 (39%) returned the questionnaire and of these 97 were usable for data analysis. A majority (67% and 75.3%) of dietitians took an active role in decisions regarding initiating and discontinuing invasive and noninvasive nutritional support respectively. The clinical dietitians in this study ranked (l=low;5=high) advance directives as the most influential factor in making nutrition support decisions (mean 3.78±1.11). The most frequently occurring ethical conflicts were related to justification for initiating nutrition support (mean 2.95±1.06) and responsibility for seeing that patients receive appropriate nutrition support (mean 2.86+1.43). The ethical issue that was perceived as having greatest intensity was use of invasive nutritional support for terminally ill patients (mean 2.79±1.6). The most useful resources in ethical decision making were input from other members of the health care team (77%), personal experience (61%), and professional code of ethics (57.7%). Dietitians are actively involved in ethical decision making, many regularly encounter ethical problems in practice, and they use a variety of resources to assist in resolving ethical dilemmas.

Patient preference for the management of mildly abnormal Papanicolaou smears.

Our objective was to investigate patient knowledge, desire for participation in medical decision making, and preference for the management of mildly abnormal Papanicolaou (Pap) smears (low-grade squamous intraepithelial lesions [LGSIL]) in the context of the continuing controversy between active (immediate colposcopy and biopsy) and surveillance (repeat Pap smears) management strategies. One hundred thirty-six women referred for a diagnostic colposcopy with a first-time mildly abnormal Pap smear result completed questionnaires before contact with either the nurse or physician. They were given the State-Trait Anxiety Inventory, the CESD Depression scale, and a knowledge about dysplasia quiz. They were then presented with the two management options and asked to state a preference, if any. They then completed the Problem Solving-Decision Making Scale, a measure of desire for involvement in medical decision making. The majority of women in this sample opted for the active management strategy. Management preference was related to anxiety, with the most anxious women more likely to choose the active management strategy. Management preference was not related to knowledge or to desire for an active role in decision making, although the more knowledgeable women also reported a desire for an active role in the decision-making process. Given the current controversy over the management of mildly abnormal Pap smears (LGSIL), as well as the fact that there is no conclusive evidence to support one strategy over another, the informed management preference of women affected by these decisions should be factored into the equation.

Information and patient participation in screening for prostate cancer

The purpose of this study was to determine if providing men with information about screening for prostate cancer would enable them to assume a more active role in decision making with their family physician, and lower levels of anxiety and decisional conflict. Men were recruited from one family medical clinic in Winnipeg, Manitoba. One hundred men scheduled for a periodic health examination (PHE) were randomly assigned to receive verbal and written information either prior to the PHE, or following the second interview. Men completed measures of preferred decisional role and anxiety prior to the PHE; and assumed decisional role, decisional conflict, and anxiety post PHE. Results demonstrated that men who received the information prior to the PHE assumed a significantly more active role in making a screening decision, and had lower levels of decisional conflict post PHE. The two groups did not differ with regard to levels of state anxiety. Providing men with information enables them to make informed screening decisions with their family physicians.