Cancer treatments are complex, involving multiple clinicians, toxic therapies, and uncertain outcomes. Consequently, patients are vulnerable when breakdowns in care occur. This study explored cancer patients' perceptions of preventable, harmful events; the impact of these events; and interactions with clinicians after such events.
Patients and Methods
In-depth telephone interviews were conducted with cancer patients from three clinical sites. Patients were eligible if they believed: something “went wrong” during their cancer care; the event could have been prevented; and the event caused, or could have caused, significant harm. Interviews focused on patients' perceptions of the event, its impact, and clinicians' responses to the event.
Ninety-three of 416 patients queried believed something had gone wrong in their care that was preventable and caused or could have caused harm. Seventy-eight patients completed interviews. Of those interviewed, 28% described a problem with medical care, such as a delay in diagnosis or treatment; 47% described a communication problem, including problems with information exchange or manner; and 24% described problems with both medical care and communication. Perceived harms included physical and emotional harm, disruption of life, effect on family members, damaged physician-patient relationship, and financial expense. Few clinicians initiated discussion of the problematic events. Most patients did not formally report their concerns.
Cancer patients who believe they experienced a preventable, harmful event during their cancer diagnosis or care often do not formally report their concerns. Systems are needed to encourage patients to report such events and to help physicians and health care systems respond effectively.
To examine the psychometric properties of two new health literacy tests, and to evaluate score validity.
Adults aged 40 to 71 completed the Cancer Message Literacy Test-Listening (CMLT- Listening), the Cancer Message Literacy Test-Reading (CMLT-Reading), the REALM, the Lipkus numeracy test, a brief knowledge test (developed for this study) and five brief cognitive tests. Participants also self-reported educational achievement, current health, reading ability, ability to understand spoken information, and language spoken at home.
Score reliabilities were good (CMLT-Listening: alpha = .84) to adequate (CMLT-Reading: alpha =.75). Scores on both CMLT tests were positively and significantly correlated with scores on the REALM, numeracy, cancer knowledge and the cognitive tests. Mean CMLT scores varied as predicted according to educational level, language spoken at home, self-rated health, self-reported reading, and self-rated ability to comprehend spoken information.
The psychometric findings for both tests are promising. Scores appear to be valid indicators of comprehension of spoken and written health messages about cancer prevention and screening.
The CMLT-Listening will facilitate research into comprehension of spoken health messages, and together with the CMLT-Reading will allow researchers to examine the unique contributions of listening and reading comprehension to health-related decisions and behaviors.
Health literacy; Cancer prevention; Psychometrics
Publicly reported performance on quality measures is intended to enable patients to make more informed choices. Despite the growing availability of these reports, patients’ use remains limited and disparities exist. Low health literacy and numeracy are two barriers that may contribute to these disparities. Patient navigators have helped patients overcome barriers such as these in other areas, such as cancer care and may prove useful for overcoming barriers to using publicly reported quality data.
The goals of this study are: to determine the efficacy of a patient navigator intervention to assist low-income pregnant women in the use of publicly available information about quality of care when choosing a pediatrician; to evaluate the relative importance of factors influencing women’s choice of pediatric practices; to evaluate the effect of the intervention on patient engagement in management of their own and their child’s health care; and to assess variation in efficacy of the intervention for sub-groups based on parity, age, and race/ethnicity. English speaking women ages 16 to 50 attending a prenatal clinic at a large urban medical center will be randomized to receive an in-person navigator intervention or an informational pamphlet control between 20 to 34 weeks of gestation. The intervention will include in-person guided use of the Massachusetts Health Quality Partners website, which reports pediatric practices’ performance on quality measures and patient experience. The primary study outcomes will be the mean scores on a) clinical quality and b) patient experience measures.
Successful completion of the study aims will yield important new knowledge about the value of guided website navigation as a strategy to increase the impact of publicly reported quality data and to reduce disparities in use of these data.
Publicly reported quality data; Pediatric; Patient navigator; Pregnancy; Intervention studies; Randomized trials
The sources of stress for families of nursing home (NH) residents with advanced dementia have not been well described. Semi--structured interviews were conducted with 16 family members previously enrolled in the Choices, Attitudes and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study, a prospective cohort of 323 NH residents with advanced dementia and their family members. Questions inquired about the experience of having a family member in the NH, communication with health care professionals, surrogate decision-making, emotional distress and recommendations for improvement in care. Transcripts were analyzed using the constant comparative method. The majority of participants were female (63%), children of the resident (94%) and white (94%). The average age was 62 years. Four themes emerged: 1) inadequate resident personal care, resulting in family member vigilance and participation in care; 2) stress at the time of NH admission; 3) lack of communication with NH physicians; and 4) challenges of surrogate decision making, including the need for education to support advance care planning and end-of-life decisions. Our results support the provision of emotional support to families upon resident admission, education regarding prognosis to guide decision making, improved resident care and greater communication with health care professionals.
caregivers; long-term care; Alzheimer’s disease
Ability to understand spoken health information is an important facet of health literacy, but to date, no instrument has been available to quantify patients’ ability in this area. We sought to develop a test to assess comprehension of spoken health messages related to cancer prevention and screening to fill this gap, and a complementary test of comprehension of written health messages.
We used the Sentence Verification Technique to write items based on realistic health messages about cancer prevention and screening, including media messages, clinical encounters and clinical print materials. Items were reviewed, revised, and pre-tested. Adults aged 40 to 70 participated in a pilot administration in Georgia, Hawaii, and Massachusetts.
The Cancer Message Literacy Test-Listening is self-administered via touchscreen laptop computer. No reading is required. It takes approximately 1 hour. The Cancer Message Literacy Test-Reading is self-administered on paper. It takes approximately 10 minutes.
These two new tests will allow researchers to assess comprehension of spoken health messages, to examine the relationship between listening and reading literacy, and to explore the impact of each form of literacy on health-related outcomes.
Researchers and clinicians now have a means of measuring comprehension of spoken health information.
Health literacy; Cancer prevention; Instrument development
Parents of pediatric oncology patients participated in a proactive risk assessment method, identifying processes that pose a risk for medication errors involving home oral chemotherapy.
Observational studies describe high rates of errors in home oral chemotherapy use in children. In hospitals, proactive risk assessment methods help front-line health care workers develop error prevention strategies. Our objective was to engage parents of children with cancer in a multisite study using proactive risk assessment methods to identify how errors occur at home and propose risk reduction strategies.
We recruited parents from three outpatient pediatric oncology clinics in the northeast and southeast United States to participate in failure mode and effects analyses (FMEA). An FMEA is a systematic team-based proactive risk assessment approach in understanding ways a process can fail and develop prevention strategies. Steps included diagram the process, brainstorm and prioritize failure modes (places where things go wrong), and propose risk reduction strategies. We focused on home oral chemotherapy administration after a change in dose because prior studies identified this area as high risk.
Parent teams consisted of four parents at two of the sites and 10 at the third. Parents developed a 13-step process map, with two to 19 failure modes per step. The highest priority failure modes included miscommunication when receiving instructions from the clinician (caused by conflicting instructions or parent lapses) and unsafe chemotherapy handling at home. Recommended risk assessment strategies included novel uses of technology to improve parent access to information, clinicians, and other parents while at home.
Parents of pediatric oncology patients readily participated in a proactive risk assessment method, identifying processes that pose a risk for medication errors involving home oral chemotherapy.
Guidelines on apology and disclosure after adverse events and errors have been in place for over five years. This study examines whether patients consider recommended responses to be appropriate and desirable, and whether clinicians' actions after adverse events are consistent with recommendations.
Patients who believed that something had gone wrong during their cancer care were identified. During in-depth interviews, patients described the event, clinicians' responses, and their reactions.
78 patients were interviewed. Patients' valued apology and expressions of remorse, empathy and caring, explanation, acknowledgement of responsibility, and efforts to prevent recurrences, but these key elements were often missing. For many patients, actions and evidence of clinician learning were most important.
Patients' reports of apology and disclosure when they believe something has gone wrong in their care suggest that clinicians' responses continue to fall short of expectations.
Clinicians preparing to talk with patients after an adverse event or medical error should be aware that patients expect their actions to be congruent with their words of apology and caring. Healthcare systems need to support clinicians throughout the disclosure process, and facilitate both system and individual learning to prevent recurrences.
For patients to effectively manage gout, they need to be aware of the impact of diet, alcohol use, and medications on their condition. We sought to examine patients’ knowledge and beliefs concerning gout and its treatment in order to identify barriers to optimal patient self-management.
We identified patients (≥18 years of age) cared for in the setting of a multispecialty group practice with documentation of at least one health care encounter associated with a gout diagnosis during the period 2008–2009 (n = 1346). Patients were sent a questionnaire assessing knowledge with regard to gout, beliefs about prescription medications used to treat gout, and trust in the physician. Administrative electronic health records were used to identify prescription drug use and health care utilization.
Two hundred and forty patients returned surveys out of the 500 contacted for participation. Most were male (80%), white (94%), and aged 65 and older (66%). Only 14 (6%) patients were treated by a rheumatologist. Only a minority of patients were aware of common foods known to trigger gout (e.g., seafood [23%], beef [22%], pork [7%], and beer [43%]). Of those receiving a urate-lowering medication, only 12% were aware of the short-term risks of worsening gout with initiation. These deficits were more common in those with active as compared to inactive gout.
Knowledge deficits about dietary triggers and chronic medications were common, but worse in those with active gout. More attention is needed on patient education on gout and self-management training.
Beliefs; Treatment; Gout; Dietary influence; Physician-patient communication
The purposes of the present study were to examine patient satisfaction survey data for evidence of response bias, and to demonstrate, using simulated data, how response bias may impact interpretation of results.
Patient satisfaction ratings of primary care providers (family practitioners and general internists) practicing in the context of a group-model health maintenance organization and simulated data generated to be comparable to the actual data.
Correlational analysis of actual patient satisfaction data, followed by a simulation study where response bias was modeled, with comparison of results from biased and unbiased samples.
A positive correlation was found between mean patient satisfaction rating and response rate in the actual patient satisfaction data. Simulation results suggest response bias could lead to overestimation of patient satisfaction overall, with this effect greatest for physicians with the lowest satisfaction scores.
Findings suggest that response bias may significantly impact the results of patient satisfaction surveys, leading to overestimation of the level of satisfaction in the patient population overall. Estimates of satisfaction may be most inflated for providers with the least satisfied patients, thereby threatening the validity of provider-level comparisons.
Patient satisfaction; response bias; response rate
We sought to examine patients’ and providers’ views on the treatment of gout to better understand why management is suboptimal.
In-depth telephone interviews were conducted with gout patients (n=26) who initiated treatment with a urate-lowering drug (ULD) in the prior 6 months and with providers who care for gout patients (n=15). The interviews were audiotaped and transcribed verbatim. Using qualitative methods, results were analyzed and themes were identified. Interviews focused on the acute management, chronic management, and prevention and improvement strategies.
Providers viewed the majority of patients as having excellent relief with nonsteroidal anti-inflammatories, colchicine and glucocorticoids while some patients felt these medications were ineffective. Providers felt most patients had a good understanding of the rationale for ULD therapy and that patients responded well. Some patients felt ULDs triggered, worsened or had no impact on their disease. Most providers thought medication adherence was relatively good. Some patients reported discontinuing medications. Discontinuations were largely purposeful and due to clinical or financial concerns. Most providers thought their skills adequate to teach disease self-management behaviors. Patients requested more information and longer visit times.
Providers view gout as easily managed while patients report challenges and purposeful nonadherence.
medication use; gout treatment; medication adherence; qualitative
Health messages on television and other mass media have the potential to significantly influence the public’s health-related knowledge and behaviors, but little is known about people’s ability to comprehend such messages. To investigate whether people understood the spoken information in media messages about cancer prevention and screening, we recruited 44 adults from 3 sites to view 6 messages aired on television and the internet. Participants were asked to paraphrase main points and selected phrases. Qualitative analysis methods were used to identify what content was correctly and accurately recalled and paraphrased, and to describe misunderstandings and misconceptions. While most participants accurately recalled and paraphrased the gist of the messages used here, over-generalization (e.g., believing preventative behaviors to be more protective than stated), loss of details (e.g., misremembering the recommended age for screening) and confusion or misunderstandings around specific concepts (e.g., interpreting “early stage” as the stage in one’s life rather than cancer stage) were common. Variability in the public’s ability to understand spoken media messages may limit the effectiveness of both pubic health campaigns and provider-patient communication. Additional research is needed to identify message characteristics which enhance understandability and improve comprehension of spoken media messages around cancer.
Clear and complete communication between health care providers is a prerequisite for safe patient management and is a major priority of the Joint Commission's 2008 National Patient Safety Goals. The goal of this study was to describe nurses' perceptions of nurse-physician communication in the long-term care (LTC) setting.
Mixed-method study including a self-administered questionnaire and qualitative semi-structured telephone interviews of licensed nurses from 26 LTC facilities in Connecticut. The questionnaire measured perceived openness to communication, mutual understanding, language comprehension, frustration, professional respect, nurse preparedness, time burden and logistical barriers. Qualitative interviews focused on identifying barriers to effective nurse-physician communication that may not have previously been considered and eliciting nurses' recommendations for overcoming those barriers.
Three-hundred seventy-five (375) nurses completed the questionnaire and 21 nurses completed qualitative interviews. Nurses identified several barriers to effective nurse-physician communication: lack of physician openness to communication, logistic challenges, lack of professionalism, and language barriers. Feeling hurried by the physician was the most frequent barrier (28%), followed by finding a quiet place to call (25%) and difficulty reaching the physician (21%). In qualitative interviews, there was consensus that nurses needed to be brief and prepared with relevant clinical information when communicating with physicians and that physicians needed to be more open to listening.
A combination of nurse and physician behaviors contributes to ineffective communication in the LTC setting. These findings have important implications for patient safety and support the development of structured communication interventions to improve quality of nurse-physician communication.
Communication; physician-nurse relationships; patient safety; nursing home; telephone
Research suggests that pharmaceutical marketing influences prescribing and may cause cognitive dissonance for prescribers. This work has primarily been with physicians and physician–trainees. Questions remain regarding why prescribers continue to meet with pharmaceutical representatives (PRs).
To describe the reasons that prescribers from various health professions continue to interact with PRs despite growing evidence of the influence of these interactions.
DESIGN, SETTING, AND PARTICIPANTS
Multi-disciplinary focus groups with 61 participants held in practice settings and at society meetings.
Most prescribers participating in our focus groups believe that overall PR interactions are beneficial to patient care and practice health. They either trust the information from PRs or feel that they are equipped to evaluate it independently. Despite acknowledgement of study findings to the contrary, prescribers state that they are able to effectively manage PR interactions such that their own prescribing is not adversely impacted. Prescribers describe few specific strategies or policies for these interactions, and report that policies are not consistently implemented with all members of a clinic or institution. Some prescribers perceive an inherent contradiction between academic centers and national societies receiving money from pharmaceutical companies, and then recommending restriction at the level of the individual prescriber. Prescribers with different training backgrounds present a few novel reasons for these meetings.
Despite evidence that PR detailing influences prescribing, providers from several health professions continue to believe that PR interactions improve patient care, and that they can adequately evaluate and filter information presented to them by PRs. Focus group comments suggest that cultural change is necessary to break the norms that exist in many settings. Applying policies consistently, considering non-physician members of the healthcare team, working with trainees, restructuring the current primary care model and offering convenient, individualized, non-biased educational options may aid success.
pharmaceutical marketing; prescriber behavior; policy; training
There are effective treatments to prevent osteoporotic fractures, but these treatments are underutilized.
To evaluate the influence of patient characteristics, perceptions, knowledge and beliefs about osteoporosis on the decision to initiate osteoporotic treatment.
We identified female members of a managed care plan who had a dual energy x-ray absorptiometry (DXA) bone density test and fulfilled World Health Organization criteria for osteoporosis. Patients were excluded if they received osteoporotic medications in the prior 6 months.
Patients were sent a questionnaire that included items assessing satisfaction with physician–patient communication, trust in the physician, osteoporosis knowledge and beliefs, beliefs about prescription medications, and perceptions of barriers to medication use. Administrative electronic health records were used to identify prescription drug use and health care utilization.
Two hundred and thirty-six women returned surveys and research authorization forms out of 465 contacted for participation. One hundred and thirty-five (57.2%) filled a prescription for an osteoporotic drug in the first 3 months after the DXA exam. The largest differences between initiators and non-initiators were in beliefs in the benefits of medications, and distrust of medications, with initiators believing more strongly in the benefits and effectiveness of medications (p < .001), and non-initiators reporting more distrust of medications (p < .001). Osteoporosis knowledge and the belief that osteoporosis is a serious disease were also related to therapy initiation in bivariate analysis.
Only 57% of patients initiated osteoporotic medication within 3 months of diagnosis. The decision to start osteoporosis treatment appeared to be related to a patient’s beliefs in the effectiveness of osteoporosis medications and distrust of medications.
medication adherence; patient preferences; osteoporosis; decision-making
An estimated 20–50% of patients do not take medications as recommended. Accepting a doctor’s recommendation is the first step in medication adherence, yet little is known about patients’ beliefs and preferences about how medications are prescribed.
To explore patients’ beliefs and preferences about medication prescribing to understand factors that might affect medication adherence.
Fifty members from 2 health plans in Massachusetts participated in in-depth telephone interviews. Participants listened to an audio-vignette of a doctor prescribing a medication to a patient and were asked a series of questions related to the vignette. Responses were reviewed in an iterative process to identify themes related to participants’ beliefs and preferences about medication prescribing.
Participants’ beliefs and preferences about medication prescribing encompassed 3 major areas: patient–doctor relationships, outside influences, and professional expertise. Important findings included participants’ concerns about the pharmaceutical industry’s influence on doctors’ prescribing practices and beliefs that there is a clear “best” medication for most health problems.
Patients’ beliefs and preferences about medication prescribing may affect medication adherence. Additional empiric studies that explore whether doctors’ relationships with pharmaceutical representatives impact medication adherence by affecting trust are indicated. In addition, it would be worthwhile to explore whether discussions between patients and doctors regarding equipoise (no clear scientific evidence for 1 treatment choice over another) affect medication adherence.
medication adherence; qualitative; patient preferences; communication; medication prescribing; pharmaceutical detailing; shared decision making
Disclosure of medical errors is encouraged, but research on how patients respond to specific practices is limited.
This study sought to determine whether full disclosure, an existing positive physician-patient relationship, an offer to waive associated costs, and the severity of the clinical outcome influenced patients' responses to medical errors.
Four hundred and seven health plan members participated in a randomized experiment in which they viewed video depictions of medical error and disclosure.
Subjects were randomly assigned to experimental condition. Conditions varied in type of medication error, level of disclosure, reference to a prior positive physician-patient relationship, an offer to waive costs, and clinical outcome.
Self-reported likelihood of changing physicians and of seeking legal advice; satisfaction, trust, and emotional response.
Nondisclosure increased the likelihood of changing physicians, and reduced satisfaction and trust in both error conditions. Nondisclosure increased the likelihood of seeking legal advice and was associated with a more negative emotional response in the missed allergy error condition, but did not have a statistically significant impact on seeking legal advice or emotional response in the monitoring error condition. Neither the existence of a positive relationship nor an offer to waive costs had a statistically significant impact.
This study provides evidence that full disclosure is likely to have a positive effect or no effect on how patients respond to medical errors. The clinical outcome also influences patients' responses. The impact of an existing positive physician-patient relationship, or of waiving costs associated with the error remains uncertain.
medical error; disclosure; physician; patient relationship; compensation and redress
Trainees are exposed to medical errors throughout medical school and residency. Little is known about what facilitates and limits learning from these experiences.
To identify major factors and areas of tension in trainees' learning from medical errors.
DESIGN, SETTING, AND PARTICIPANTS
Structured telephone interviews with 59 trainees (medical students and residents) from 1 academic medical center. Five authors reviewed transcripts of audiotaped interviews using content analysis.
Trainees were aware that medical errors occur from early in medical school. Many had an intense emotional response to the idea of committing errors in patient care. Students and residents noted variation and conflict in institutional recommendations and individual actions. Many expressed role confusion regarding whether and how to initiate discussion after errors occurred. Some noted the conflict between reporting errors to seniors who were responsible for their evaluation. Learners requested more open discussion of actual errors and faculty disclosure. No students or residents felt that they learned better from near misses than from actual errors, and many believed that they learned the most when harm was caused.
Trainees are aware of medical errors, but remaining tensions may limit learning. Institutions can immediately address variability in faculty response and local culture by disseminating clear, accessible algorithms to guide behavior when errors occur. Educators should develop longitudinal curricula that integrate actual cases and faculty disclosure. Future multi-institutional work should focus on identified themes such as teaching and learning in emotionally charged situations, learning from errors and near misses and balance between individual and systems responsibility.
medical errors; medical education; UME; GME; teaching methods