Patient Education and Counseling

Editorial Board

2012-05-01

Comprehensive and interdisciplinary patient education and counseling programs for highly distressed patients with rheumatic diseases – a need in rheumatology care and a challenge to outcome research

Arnstein Finset — 2012-05-01

In this issue of Patient Education and Counseling we publish a paper by a Dutch group of rehabilitation researchers, with Johanna E. Vriezekolk as the first author, with the title “Behavior change, acceptance, and coping flexibility in highly distressed patients with rheumatic diseases: feasibility of a cognitive-behavioral therapy in multimodal rehabilitation” . The paper describes a theory-driven and empirically based intervention for highly distressed patients with rheumatic disease embedded in a multi-modal rehabilitation program.

“Jum’ah” Syndrome

Ruth Kannai — 2011-09-23

Abstract: This is my memoir as a sick child, hospitalized in the Pediatric ward of a large hospital, many years ago. The story tells about my friendship with another young patient, Jum’ah, a Bedouin child who suffered from Congenital Cyanotic Heart Disease, to whom the pediatric ward was Home.My Childish understanding of Jum’ah's loneliness, anxiety and struggle to be loved and belonged are described in this narrative. I describe how this experience still has an influence on my adult professional and personal concepts.

Patient compliance with telephone triage recommendations: A meta-analytic review

Rebecca J. Purc-Stephenson, Christine Thrasher — 2011-10-17

Abstract: Objective: To systematically investigate the extent to which patients comply with triage advice from telenurses and to identify factors that potentially influence compliance.Methods: Findings from 13 studies identified through interdisciplinary research databases (1990–2010) were meta-analyzed. Separate pooled analyses compared patients’ compliance rates for emergency services and office care (13 outcomes), emergency services and self care (13 outcomes), and self care and office care (12 outcomes).Results: Overall patient compliance was 62%, but varied by intensity of care recommended with low compliance rates for advice to see a general practitioner. Reasons for noncompliance include patients reporting to have heard a different disposition, patients’ intentions and health beliefs.Conclusion: Patient compliance to triage recommendations was influenced by the interactive role of patient perceptions and the quality of provider communication, both of which were mediated by access to health services. Further research is needed to clarify whether noncompliance is attributable to poor communication by the nurse or patient misinterpretation.Practice implications: We highlight the need for communication-skills training in a telephone-consultation context that is patient centered, and specifically addresses building active listening and active advising skills and advantages to structuring the call.

Impact of health literacy on outcomes and effectiveness of an educational intervention in patients with chronic diseases

2011-09-19

Abstract: Objective: Study impact of health literacy on educational intervention for patients “Living with Coronary Artery Disease.”Methods: 187 patients were randomized to: VHS/DVD plus printed booklet; or booklet alone prior to scheduled visit. Main outcome measures included CAD knowledge assessment, clinical outcomes (weigh and blood pressure) and health behaviors (diet, exercise, and smoking); while functional health literacy was assessed as a possible predictor variable.Results: Knowledge scores and health behaviors improved following both interventions. Those receiving the booklet and video also had a significant improvement in exercise, and weight loss. There was a trend (p=0.07) towards greater improvement in test scores among those receiving the booklet plus video. Patients with lower health literacy benefited as much as higher literacy patients.Conclusions: Incorporation of an educational program into clinical visits for patients with chronic disease improved disease-specific knowledge and prompted patients to become activated and involved in their care, improving health behaviors and outcomes. Lower health literacy was not a barrier to this beneficial effect.Practice implications: Patients with lower health literacy may also benefit from educational, shared decision-making interventions.

First insights on the validity of the concept of Cancer Literacy: A test in a sample of Ticino (Switzerland) residents

Nicola Diviani, Peter Johannes Schulz — 2011-09-26

Abstract: Objective: To develop a measure of Cancer Literacy and have a first insight into the validity of the concept.Methods: A measure of Cancer Literacy was developed and administered to a sample of Ticino (Switzerland) residents (N=639). Internal consistency, test-retest reliability and construct validity of the measure were assessed.Results: The Cancer Literacy Score (CLS) showed acceptable internal consistency and 4-week test-retest reliability. Independent-samples t-tests and one-way ANOVAs confirmed that women, Swiss citizens, people with higher educational levels, people with a medical qualification, and people who had played an active role in the cancer experience of a family member or a friend presented significantly higher CLS. Correlational analyses indicated a more positive attitude towards screening participation and engagement in health-promoting behaviours in people with higher levels of Cancer Literacy.Conclusions and practice implications: The Cancer Literacy scale provides us with evidence of the validity of our conceptual attempt to go in the direction of a context- and content-specific concept of health literacy. Despite some limitations and the need for further refinement before it can be applied on a larger scale, the scale already offers Ticino researchers and public health workers a comprehensive measure of cancer knowledge.

The influence of health literacy level on an educational intervention to improve glaucoma medication adherence

2011-10-14

Abstract: Objective: To test an educational intervention targeted to health literacy level with the goal of improving glaucoma medication adherence.Methods: One hundred and twenty-seven veterans with glaucoma were randomized to glaucoma education or standard care. The intervention included a video scripted at a 4th, 7th, or 10th grade level, depending on the subject's literacy level. After six months, the number of days without glaucoma medicine (DWM) according to pharmacy records for the intervention and control groups was compared.Results: The number of DWM in the six months following enrollment was similar for control and intervention groups (intervention, n=67, DWM=63±198; standard care, n=60, DWM=65±198; p=0.708). For each subgroup of literacy (adequate, marginal, inadequate), subjects in the intervention group experienced less mean DWM than subjects in the control group and the effect size (ES) increased as literacy decreased: adequate literacy, ES 0.069; marginal, ES 0.183, inadequate, ES 0.363. Decreasing health literacy skills were associated with decreasing self-reported satisfaction with care (slope=0.017, SE=0.005, p=0.002).Conclusions: Patients with decreased health literacy skills may benefit from educational efforts tailored to address their health literacy level and learning style.Practice implications: Providers should consider health literacy skills when engaging in glaucoma education.

Development and validation of the high blood pressure-focused health literacy scale

2011-10-26

Abstract: Objective: While the role of health literacy in chronic disease management is well documented, few intervention studies have been reported. A major barrier to designing and implementing such interventions is the lack of valid health literacy tools. This study developed and tested a novel health literacy scale for individuals with high blood pressure (HBP).Methods: A two-step design process was used: In the construction phase, focus group studies and a literature review were conducted to generate a pool of items. The testing phase involved a psychometric evaluation and pilot-testing of the scale on hypertensive Korean Americans (n=386). The end product was a HBP-health literacy scale (HBP-HLS) with two essential domains, print literacy and functional health literacy.Results: Psychometric testing indicated that the scale was reliable (Kuder–Richardson-20 coefficient=0.98), valid (content validity index ≥0.8), and significantly correlated with theoretically selected variables (education, r=0.67, p<0.01; HBP knowledge, r=0.33, p<0.01).Conclusion: The HBP-HLS demonstrated its utility for evaluating HBP management interventions in the community setting.Practice implications: Utilizing the HBP-HLS should be considered as a potential tool for improving health literacy and evaluating intervention studies in the context of HBP management.

Behavior change, acceptance, and coping flexibility in highly distressed patients with rheumatic diseases: Feasibility of a cognitive-behavioral therapy in multimodal rehabilitation

2011-10-07

Abstract: Objective: To describe the development and feasibility of the integration of a cognitive-behavioral therapy (CBT) within a multimodal rehabilitation program for highly distressed patients with rheumatic diseases.Methods: Development included the detailed specification of the theoretical and empirical-based underpinnings of the CBT and the comprehensive description of its design and content. Feasibility was assessed by percentage of eligible patients, attrition and attendance rates, and patient satisfaction.Results: The developed CBT component seeks to decrease psychological distress and improve activities and participation across multiple life domains by accomplishing behavior change, acceptance, and coping flexibility. Motivational interviewing was applied to endorse patients’ own reasons to change. Forty percent (35/87) of the eligible patients were admitted to the program. Attendance rate (>95%) was high. Patient satisfaction ranged from 6.8 to 8.0 (10-point scale).Conclusion: Integrating CBT within a multimodal rehabilitation program is feasible. An acceptable proportion of the intended patient sample is eligible and patient's attendance and satisfaction is high.Practice implications: Patients with impaired physical and psychosocial functioning despite adequate medical treatment pose a great challenge. Their treatment outcome may be improved by screening and selecting highly distressed patients and offering them a CBT embedded in multimodal rehabilitation program.

The reporting of previous lifestyle counseling by persons at high risk of Type 2 diabetes

2011-09-23

Abstract: Objective: To assess (i) whether the reporting of counseling previously received is associated with high-risk individuals’ agreement to participate in lifestyle intervention, (ii) whether the reporting of previous counseling differed within such a high-risk group, and (iii) the associations between lifestyles and previous lifestyle counseling.Methods: Cross-sectional data were drawn from 10149 adults at high risk of Type 2 diabetes, who were participating in a Finnish national diabetes prevention project (FIN-D2D). Bivariate analysis and multivariate logistic regression were used.Results: In relation to the reporting of previous counseling, no difference was found between persons who had agreed and persons who had not agreed to participate in the lifestyle intervention. Persons who were more educated or who had dyslipidemia or diabetes were more likely than the others to report previous counseling. A generally healthy lifestyle, or certain health behaviors (being a non-smoker or eating large amounts of fruit and vegetables) may make the reporting of previous counseling more likely.Conclusion: The results raise questions about the amount and quality of the previously received lifestyle counseling.Practice implications: There is a need for sustainable lifestyle counseling structures, within vigorously implemented diabetes prevention projects, if long-lasting lifestyle changes are to be achieved.

Managing the delivery of bad news: An in-depth analysis of doctors’ delivery style

Joanne Shaw, Stewart Dunn, Paul Heinrich — 2011-09-15

Abstract: Objective: The purpose of this study was to identify and describe the delivery styles doctors typically use when breaking bad news (BBN).Methods: Thirty one doctors were recruited to participate in two standardised BBN consultations involving a sudden death. Delivery styles were determined using time to deliver the bad news as a standardised differentiation as well as qualitative analysis of interaction content and language style. Communication performance was also assessed.Results: Analysis of BBN interactions revealed three typical delivery styles. A blunt style characterised by doctors delivering news within the first 30s of the interaction; Forecasting, a staged delivery of the news within the first 2min and a stalling approach, delaying news delivery for more than 2min. This latter avoidant style relies on the news recipient reaching a conclusion about event outcome without the doctor explicitly conveying the news.Conclusion: Three typical bad news delivery styles used by doctors when BBN were confirmed both semantically and operationally in the study. The relationship between delivery style and the overall quality of BBN interactions was also investigated.Practice implications: This research provides a new template for approaching BBN training and provides evidence for a need for greater flexibility when communicating bad news.

Concordance between physician communication style and patient attitudes predicts patient satisfaction

Gaëtan Cousin, Marianne Schmid Mast, Debra L. Roter, Judith A. Hall — 2011-09-12

Abstract: Objective: This study tested whether the impact of the physician's communication style on patient satisfaction differs depending on patients’ attitudes toward caring and sharing. We predicted that the impact of physician caring on patient satisfaction depends on patient attitudes toward caring, and that the impact of physician sharing on patient satisfaction depends on patient attitudes toward sharing.Methods: Participants (N=167) were asked to imagine that they were consulting for recurrent headaches. They interacted on a computer with a virtual physician that communicated either in a low or high caring way and either in a low or high sharing way (2×2 design). Then, participants answered questions about their attitudes toward caring and sharing and about their satisfaction with the physician.Results: Hypotheses were confirmed. Furthermore, a high caring physician communication style led to higher satisfaction than a low caring one, regardless of participants’ attitudes toward caring, while satisfaction with physicians’ level of sharing was dependent on the participants’ attitude toward sharing.Conclusion and practice implications: Physicians may adopt a high caring style with confidence that all patients will benefit. Adoption of a sharing style should be more carefully adjusted to patient attitudes.

Disparities in patient reports of communications to inform decision making in the DECISIONS survey

Brian J. Zikmund-Fisher, Mick P. Couper, Angela Fagerlin — 2011-09-05

Abstract: Objective: To identify patient- and decision-type predictors of two key aspects of informed decision making: discussing the cons (not just the pros) of medical interventions and asking patients what they want to do.Methods: Using data from 2473 members of the DECISIONS survey, a nationally representative sample of U.S. adults age 40+, we used logistic regression analysis to identify which patient characteristics predicted patient reports of healthcare providers discussing cons or eliciting preferences about one of 9 common medical decisions.Results: Multiple demographic characteristics predicted both discussions of cons and elicitations of preferences, although the specific characteristics varied between decision contexts. In particular, African-American respondents reported being more likely to receive a discussion of the cons of cancer screening (OR=1.69, p<0.05) yet less likely to have been asked their opinion about either getting a cancer screening test (OR=0.56, p<0.05) or initiating medications (OR=0.53, p<0.05). Significant cross-decision variations remained even after controlling for patient characteristics.Conclusions: Important disparities in patient communication and involvement appear to exist both between different types of medical decisions and between different types of patients.Practice implications: Providers must make sure to consistently discuss the cons of treatment and to solicit input from all patients, especially African-Americans.

What perceptions do patients have of decision making (DM)? Toward an integrative patient-centered care model. A qualitative study using focus-group interviews

2011-09-07

Abstract: Objective: To understand patients’ perceptions of decision making and identify relationships among decision-making models.Methods: This qualitative study was made up of four focus group interviews (elderly persons, users of health support groups, students, and rural inhabitants). Participants were asked to report their perceptions of decision making in three written clinical scenarios (hypertension, breast cancer, prostate cancer). The analysis was based on the principles of grounded theory.Results: Most patients perceived decision making as shared decision making, a deliberative question–response interaction with the physician that allowed patients to be experts in obtaining clearer information, participating in the care process, and negotiating compromises with physician preferences. Requesting second opinions allowed patients to maintain control, even within the paternalistic model preferred by elderly persons. Facilitating factors (trust, qualitative non-verbal communication, time to think) and obstacles (serious/emergency situations, perceived inadequate scientific competence, problems making requests, fear of knowing) were also part of shared decision making.Conclusion and practice implications: In the global concept of patient-centered care, shared decision making can be flexible and can integrate paternalistic and informative models. Physicians’ expertise should be associated with biomedical and relational skills through listening to, informing, and advising patients, and by supporting patients’ choices.

How a cancer education group serves the underserved: ‘Family’ ties and battling cancer

Daniel Dohan, Robertina Szolarova, Blue Walcer — 2011-09-22

Abstract: Objective: Socially disadvantaged cancer patients have unmet educational needs, but we know little about how educational groups might help. This exploratory study examines how a group education program met underserved patients’ needs.Methods: We examined a program for US patients in a safety-net hospital that featured English and Spanish language groups. We collected data from 54 group sessions over 28 months, including information on participant demographics, attendance, and satisfaction. Qualitative field notes collected by trained observers were analyzed via a grounded-theory approach to examine group dynamics.Results: Participants were underserved, had diverse disease sites and race/ethnicity, and reported that groups met their needs. Emergent analysis identified two themes related to group dynamics. First, members identified with each other as a fictive family, although the meaning of “family” differed in the groups. Second, groups focused on battling cancer not adjusting to life as a survivor—a focus that impaired participants’ ability to discuss coping strategies for managing negative feelings.Conclusion: Fictive ‘family’ engages participants. The emphasis on ‘family’ and resistance to coping strategies may reflect participants’ social disadvantages.Practice implications: Groups for the underserved should strive to create a ‘family’ and may have difficulty helping participants cope with their illness.

Discrete choice as a method for exploring education preferences in a Danish population of patients with type 2 diabetes

Michaela Schiøtz, Mette Bøgelund, Thomas Almdal, Ingrid Willaing — 2011-10-03

Abstract: Objective: To determine preferences among patients with type 2 diabetes for content and format of patient education.Methods: Using discrete choice methods, we surveyed patients about their preferences for patient education. We investigated preferred content and format regarding education on living well with diabetes, preventing complications, healthy eating, exercising, and psychosocial issues related to diabetes.Results: We obtained usable responses from 2187 patients with type 2 diabetes. Acquiring competencies to live a fulfilling life with diabetes, adjust diet and exercise habits, and prevent complications was significantly more highly valued than was simply being informed about these topics. Patients preferred to be involved in the planning of their diabetes care and valued individually tailored content higher than prescheduled content. Women and younger patients found diet and exercise significantly more important than did men, and patients with poorly controlled diabetes valued all education and support more highly than did patients in better control.Conclusion: Patients with type 2 diabetes prefer to be actively involved in educational activities, to develop competencies to prevent and manage complications, and to involve their social network in supporting them.Practice implications: Future patient education should enhance participation and competence development and include relatives.

Interpreter perspectives of in-person, telephonic, and videoconferencing medical interpretation in clinical encounters

2011-09-19

Abstract: Objective: To examine professional medical interpreters’ perspectives of in-person and remote interpreting modalities.Methods: Survey of interpreters at three medical centers assessing satisfaction with aspects of communication using each modality, and adequacy of videoconferencing medical interpretation (VMI) and telephonic interpretation for 21 common clinical scenarios in the hospital and ambulatory care settings.Results: 52 interpreters completed the survey (73% response). All modalities were equally satisfactory for conveying information. Respondents favored in-person to telephonic interpretation for establishing rapport (95% versus 71%, p=.002) and for facilitating clinician understanding of patients’ social and cultural backgrounds (92% versus 69%, p=.002). Scenarios with substantial educational or psychosocial dimensions had no more than 70% of respondents rating telephonic interpretation as adequate (25–70%); for all of these scenarios, VMI represented an improvement (52–87%).Conclusion: From the interpreter perspective, telephonic interpretation is satisfactory for information exchange, but less so for interpersonal aspects of communication. In scenarios where telephonic interpretation does not suffice, particularly those with substantial educational or psychosocial components, VMI offers improved communication.Practice implications: Differences in interpreters’ perspectives of modalities based on communication needs and clinical scenario suggest mixed use of multiple modalities may be the best language access strategy.

The role of hope in adaptation to uncertainty: The experience of caregivers of children with Down syndrome

Megan Truitt, Barbara Biesecker, George Capone, Thomas Bailey, Lori Erby — 2011-09-22

Abstract: Objective: The goal of this study was to investigate the relationships between perceived uncertainty, hope, and adaptation in caregivers of children with Down syndrome (DS).Methods: A total of 546 caregivers were recruited from local and national DS groups and from a DS clinic list. A cross-sectional survey examined caregivers’ levels of perceived uncertainty, hope, and adaptation. The hope that caregivers had for their child was also measured.Results: Uncertainty, hope and adaptation were all significantly correlated, with uncertainty and hope independently predicting caregiver adaptation. Caregivers’ motivation to reach goals for their child was higher than their ability to think of ways to meet those goals, and their lessened ability to think of ways to reach goals was significantly related to decreased adaptation levels.Conclusion: Findings from this study suggest that having hope in the face of uncertainty is important in adaptation but that caregivers struggle with having hope related to thinking of ways to reach goals for their child.Practice implications: The results of this study indicate that perceived uncertainty and hope may be important targets for improving psychological well-being. Interventions that assist caregivers in setting and attaining appropriate goals may be of particular interest.

Multimedia support in preoperative patient education for radical prostatectomy: The physicians’ point of view

2011-09-26

Abstract: Objective: To systematically assess the physicians’ point of view of multimedia support in preoperative patient education for radical prostatectomy.Methods: We evaluated the view of physicians performing multimedia supported preoperative educations within a randomized controlled trial. Therein 8 physicians educated 203 patients for radical prostatectomy.Results: All physicians rated multimedia supported education better than the standard procedure. Main reasons were better comprehensibility, the visual presentation, and greater ease in explaining complex issues. Objective time measurement showed no difference between both educations. The major disadvantage was the impression, that multimedia supported education lasted longer. Moreover, they had the impression that some details could be further improved. Given the choice, every physician would decide for multimedia support.Conclusion: Physicians appreciate multimedia support in preoperative education and contrary to their impression, multimedia support does not prolong patient education. Therefore, patients and physicians likewise profit from multimedia support for education and counseling.Practice implications: The readiness of physicians is a possible obstacle to this improvement, as their view is a key factor for the transition to everyday routine. Therefore, our results could alleviate this possible barrier for establishing multimedia supported education in clinical routine.

A new informed consent form model for cancer patients: Preliminary results of a prospective study by the Italian Association of Medical Oncology (AIOM)

2011-09-19

Abstract: Objectives: To document the preliminary validity of a new informed consent form (ICF) model in terms of face/content validity and feasibility, to collect patients’ and oncologists’ opinions on it, and to explore physicians’ and patients’ “knowledge”, “opinions” about “the information exchanged”.Methods: The working group for informed consent promoted by the Italian Association of Medical Oncology developed a new ICF model which was tested in ten Italian cancer centers. Patients and physicians received questionnaires on the new ICF model. Twenty-six independent oncologists were interviewed to collect their opinions.Results: Seventy eight cancer patients were enrolled: about 90% reported having received information about diagnosis and therapy and 80% about prognosis. About 63% of oncologists had no difficulty in administering the ICF. Oncologists used “correct terms” about diagnosis in 92% of patients with localized disease and in 90% with metastasis and about therapy in respectively 75.7% and 80%. About prognosis, oncologists used “vague” and “no information–no pertinent terms” in 79% of patients with localized disease and 92.5% of patients with metastasis.Conclusions: The ICF seemed to have sufficient validity and feasibility.Practice implication: This ICF model could mean that patients require oncologists to spend more time explaining the diagnosis, prognosis and treatment, increasing patient's opportunities to participate actively in the care process

Exploring online support spaces: Using cluster analysis to examine breast cancer, diabetes and fibromyalgia support groups

Annie T. Chen — 2011-09-19

Abstract: Objective: This study sought to characterize and compare online discussion forums for three conditions: breast cancer, type 1 diabetes and fibromyalgia. Though there has been considerable work examining online support groups, few studies have considered differences in discussion content between health conditions. In addition, in contrast to the extant literature, this study sought to employ a semi-automated approach to examine health-related online communities.Methods: Online discussion content for the three conditions was compiled, pre-processed, and clustered at the thread level using the bisecting k-means algorithm.Results: Though the clusters for each condition differed, the clusters fell into a set of common categories: Generic, Support, Patient-Centered, Experiential Knowledge, Treatments/Procedures, Medications, and Condition Management.Conclusion: The cluster analyses facilitate an increased understanding of various aspects of patient experience, including significant emotional and temporal aspects of the illness experience.Practice implications: The clusters highlighted the changing nature of patients’ information needs. Information provided to patients should be tailored to address their needs at various points during their illness. In addition, cluster analysis may be integrated into online support groups or other types of online interventions to assist patients in finding information.

The Chinese version of the Diabetes Empowerment Scale—Short Form

Ann Tak-Ying Shiu, Kai-chow Choi, Rebecca Yee-Man Wong — 2011-10-13

The importance of developing the self-management ability of people with diabetes has been increasingly emphasized because of a paradigm shift from the biomedical paradigm that focuses mainly on physiological endpoints to the social science paradigm that encompasses the functioning and overall wellbeing as the focus of diabetes care and education . The key drivers contributing to the paradigm shift include the increasing penetration of diabetes empowerment , defined as diabetes-related psychosocial self-efficacy, and the adoption of the chronic care model to collaboratively plan the care with people with diabetes who are the ones to face the consequences of the impact of such care on their daily living . In such a shift, diabetes empowerment has become an important outcome measure in diabetes care .