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Baile, W

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    Annotated Bibliography:

    Improving Communication in Oncology

    Kathleen Keefe-Cooperman, PsyD

    September 2000

Bayer Institute for Health Care Communication

    Copyright ? 1999 The Bayer Institute for Health Care Communication West Haven, CT

    Introduction

     We created this annotated bibliography to support the development of educational programs to help

    physicians communicate more effectively with people diagnosed with cancer. We searched Medline, Psyclit, and Cancer computerized databases for articles published primarily since 1990. Our aim was to identify empiric research, literature reviews, and literature-based opinion pieces that clarified important aspects of communication at the transition from cure or control of cancer, to control of symptoms. Thus the

    bibliography is not meant to reflect the entire clinician-patient communication literature, either generally or for people with cancer. We also recognized that the transition is in some ways an artifact of the medical profession not addressing “cure” and “care” equally, in the context of a longitudinal relationship. Despite this ideal, and for a variety of reasons, physicians and patients still experience this transition as a major shift in the goals and nature of treatment, and in the physician-patient relationship.

     We identified and annotated 375 articles for this project. This bibliography includes the ones that make the greatest contribution to understanding the transition. The articles are organized into the following categories:

I Physician-patient communication

    A) Communication skills training

    B) Physician-patient relationship

    C) Giving information

    D) Empathy and support

    E) Shared decision-making

II Oncologist stress and burnout

III Communication at the end of life: Quality of life

IV Hope and spirituality

I. PATIENT-PHYSICIAN COMMUNICATION

    A. Communication skills training

Baile WF, Kudelka AP, Beale EA, et al. Communication skills training in oncology:

    Description and preliminary outcomes of workshops on breaking bad news and managing patient

    reactions to illness. Cancer. 1999;in press. Objective: To increase oncologists' confidence in breaking bad news and managing stressful patient

    encounters.

    Design: Two half-day workshops.

    Setting: University of Texas MD Anderson Cancer Center

    Subjects: Twenty-seven oncology faculty of which fifteen attended the bad news workshop and

    twelve the "problem situation" workshop.

    Interventions: One workshop focused on breaking bad news and the other on dealing with "problem

    situations." The five-hour workshops combined a didactic presentation with experiential

    role-plays to enhance communication skills. The participants met as a large group for the

    didactic portion and in small groups with trained facilitators for the role-plays. Measures: Self-efficacy measures were administered before and after the workshops. Additionally,

    participants were mailed a follow-up workshop satisfaction questionnaire. Results: Participants expressed satisfaction with the workshop and evidenced greater confidence in

    communicating bad news and managing difficult situations. Conclusions: Communication workshops, though in need of longitudinal research, may be a viable

    means of providing training to oncologists.

Garg A, Buckman R, Kason Y. Teaching medical students how to break bad news. Can Med

    Assoc J. 1997;156:1159-1164.

    Objective: To educate medical students on how to break bad news to patients and their families in an

    empathic and competent manner.

    Design: Pre/Post test design.

    Setting: Seven teaching hospitals affiliated with the University of Toronto since 1987.

    Subjects: Out of 1260 medical students, 940 precourse and 503 postcourse questionnaires were

    completed. For the final analysis, only 359 questionnaires could be used. The course was

    given to all medical students in their 3rd preclinical year. Interventions: The course consisted of 2 half-day, 3-hour-long sessions given 1 or 2 weeks apart. The

    course goals were to reinforce medical interviewing skills learned in the previous 2 years,

    to teach advance medical interviewing skills, and to give practice in those skills while

    providing individualized, constructive feedback. Students received a workbook

    containing role-play and small-group exercises, and a recommended reading list. Two 30-

    minute videos were produced for the class and one was shown at the beginning of each

    class followed by a 15-minute discussion. The second session focused on difficult

    questions and emotions.

    Measures: Students were given pre- and postcourse questionnaires.

    Results: Students found the course enjoyable and useful. Following the course, 92% of the

    students felt they had a firm plan for giving bad news as opposed to the precourse result

    of 49%. Before the course, 23% of the students felt competent as compared to 74%

    following the course. Students who had witnessed role models break bad news rated them

    highly and had a plan in mind for how to accomplish this task as well as a higher sense of

    competence. Only 11 questionnaires showed a loss of perceived competence or strategy

    or both. The precourse questionnaire showed 68% of students thought about the task of

    breaking bad news often or very often.

Conclusions: Courses on teaching students communication skills can be incorporated into medical

    school curricula successfully with students finding the courses enjoyable and useful.

Glimelius B, Birgegard G, Hoffman K, Kvale G, Sjoden PO. Information to and communication

    with cancer patients: Improvements and psychosocial correlates in a comprehensive care program

    for patients and their relatives. Patient Education and Counseling. 1995;25:171-182.

    Objective: To evaluate the effect of a cancer care project on patients' and relatives' total situation. To

    clarify the relationships between self-reported problems related to interactions with

    medical staff and varied problems among patients and relatives. Design: Implementation of a cancer care project in which information and communication

    interventions played a central role

    Setting: All patients who were to receive chemotherapy at Akademiska sjukhuset, Uppsala, were

    invited to participate in the project.

    Subjects: One hundred and seventy-seven patients participated in the project between 3/1/87 and

    4/30/89. 120 patients' relatives were also interviewed with no more than 1 relative per

    patient interviewed. One month prior to the care project initiation, a preproject evaluation

    was conducted on 54 patients. Subjects were similar in demographics to the other groups. Interventions: The care program was a cooperative effort between a resource group and 3 wards. All

    ward personnel were involved in the project. Verbal information was supplemented with

    written information. Efforts were made to increase the relatives' participation in patient

    care and to improve care of the relatives by staff. An education program was conducted

    with the staff. In the initial months of the program, a 1-week communication course was

    held followed by regular meetings held on the wards. Communication skills practice

    involved giving first information about serious disease, and general strategies for giving

    information

    Measures: A Swedish version of the Cancer Inventory of Problems Situations was used for

    evaluation. Patients were interviewed at diagnosis, at regular intervals during treatment,

    and after the last treatment course. Relatives were interviewed at the same time as the

    patients, but separately. An additional 9 questions concerning interactions with medical

    staff were administered.

    Results: Scores for problems related to patient-staff interaction were low during the preproject

    interview, but even lower scores were seen during the project. Strong relationships were

    found between various aspects of patient- and relative-staff interactions and psychosocial

    problems, although weaker relationships were found for problems relating to information

    than for communication and control problems. Conclusions: Although the effects of specific interventions could not be measured, the education of

    medical staff was effective in lessening problems reported by patients and relatives.

Maguire P, Faulkner A, Booth K, Elliott C, Hillier V. Helping cancer patients disclose their

    concerns. Eur J Cancer. 1996;32A:78-81. Objective: To determine which behaviors promote or which hinder disclosure.

    Design: Pre- and postworkshop simulated patient interviews.

    Setting: A series of 3- to 5-day workshops aimed at improving physician-patient communication in

    a residential setting in the UK.

    Subjects: Study participants were 206 health professionals experienced in cancer care and who

    completed one of the workshops.

    Interventions: The participants set the workshop goals by determining which communication tasks they

    most wished to be addressed and then using a videotape of a consultation for discussion

    and education. Participants practiced assessing patient concerns and other tasks through

    small-group role play. Another videotape session focused upon breaking collusion,

    emotional survival and "unfinished business."

Measures: Participants interviewed two different simulated patients, 1 before the workshop and 1

    after. Each interview was audiotaped. A rating system was developed for this study to

    examine verbal communications. Two raters determined agreement by rating and

    comparing 3 transcripts. Effective behaviors were hypothesized to include open directive

    questions, psychologically focused questions, clarification of psychological issues,

    educated guesses used in a negotiating style, and empathic statements. Inhibiting

    behaviors include focusing upon physical aspects, giving advice, and offering reassurance. Results: Questions that had psychological focus, clarification of psychological aspects, and open

    directive questions showed increases in disclosure of 2 and 3 fold. Leading questions and

    focusing upon physical aspects hindered information getting. The use of open directive

    questions and empathy was positively influenced by the workshop. Inhibitory behaviors

    decreased following workshop attendance.

    Conclusions: An integrated approach is needed which combines a focus on the patient's personal world

    and physical aspects of cancer in order to effectively help this population. Advice- giving

    and reassurance needs to be delayed until the patient's concerns are elicited and

    understood.

Roter DL, Hall JA, Kern DE, Barker LR, Cole KA, Roca RP. Improving physicians'

    interviewing skills and reducing patients' emotional distress. A randomized clinical trial. Arch

    Intern Med. 1995;155:1877-1884.

    Objective: To examine the effect of communication skills training on patients' emotional distress.

    Design: A randomized, controlled field trial.

    Setting: USA

    Subjects: Six hundred and forty-eight patients and 69 of their primary care physicians.

    Interventions: Two communication skills courses concerning patient emotional distress that targeted

    either problem-defining skills or emotion-handling skills. Measures: Physicians were randomly assigned to either a no-course control group or one of the two 8

    hour communication skills courses. Office visits of the physicians were audiotaped until

    five emotionally distressed and nondistressed patients were enrolled. Patients were given

    the General Health Questionnaire. Physicians were audiotaped during simulated patient

    visits to assess proficiency. Distressed patients were monitored via telephone 2 weeks, 3

    months, and 6 months after their office visit to determine utilization of medical services

    and General Health Questionnaire Scores.

    Results: Trained physicians used significantly greater amounts of problem-defining skills or

    emotion-handling skills with no increase in the length of the office visit. Patients of

    trained physicians reported a lessening of emotional distress for up to 6 months. Conclusions: Communication skills training improved physician proficiency in reducing emotional

    distress in patients without any lengthening of the office visit.

    B. Physician-patient relationship

Beisecker AE. Patient power in doctor-patient communication: What do we know? Health

    Communication. 1990;2:105-122.

    Description of Context: To examine research that focuses on the patient's attempts to obtain information,

    to be assertive in communicating with physicians, and to be an active participant in

    medical decision-making.

    Topic/Scope: Variables that affect the doctor-patient relationship include: sociodemographic

    characteristics of the physician and patient, attitudes of both parties, and influencing

    situational factors. Patient noncompliance may represent a way for patients to assert their

    independence and power. Compliance may be affected by the patient's communication

    input. The exchange of information is influenced by the amount of information-seeking

    behaviors evidenced during the medical encounter by the patient, or the physician's

    behavior, that could discourage questions. Effective patient information-seeking behavior

    can positively affect the medical outcome. Patient assertiveness has an impact as both

    patient and doctor want to maintain control, autonomy, and power in the relationship.

    Patient communication also involves the role of the patient in medical decision-making.

    Information exchange and patient question-asking may directly influence a patient's input

    in medical decisions. This may affect the patient's psychological reactions to treatment,

    and his or her satisfaction levels.

    Conclusions/Recommendations: A patient's assertive communication behaviors or attempts to control the

    physician-patient relationship may be explained by a variety of factors. A patient's

    attitude may not predict behavior, as attitudes arise from general beliefs regarding patient

    rights while communication behaviors arise from a specific interaction context. Although

    many patients desire information, few make attempts to elicit information from doctors.

     Blanchard CG, Labrecque MS, Ruckdeschel JC, Blanchard EB. Physician behaviors, patient

    perceptions, and patient characteristics as predictors of satisfaction of hospitalized adult cancer

    patients. Cancer. 1990;65:186-192.

    Objective: To examine potential predictors of patient satisfaction as related to physician behaviors.

    Design: Examined physician-patient interactions using a behavioral checklist, questionnaires, and

    visual analogue scales.

    Setting: Three hundred and sixty-six In-patient hospital setting in NY.

    Subjects: cases involving 6 oncologists and cancer patients.

    Interventions: Physician-patient interaction during morning rounds.

    Measures: One to two observers in clinical garb observed weekday morning rounds. The physician-

    patient interaction was timed. Following rounds, the observer returned to the patient's

    room. The same observers measured physician behaviors and patient responses and were

    given the Physician Behavior Check List, and two visual analogue scales: one assessing

    how the patient's needs were met by the physician, and the other assessing the overall

    measure of the patient's involvement in the interaction. The patient also completed the 2

    visual analogues and a Patient Satisfaction Questionnaire. Results: The physician spent, on average, 4.4 minutes in each patient's room, yet the patient

    approximated that same time to be 8.8 minutes. Overall, patient satisfaction was high.

    Patients' perceptions of behavior were found to be better predictors of patient satisfaction

    than actual physician behaviors. Factors related to satisfaction were emotional support or

    needs, and information needs being perceived as met. Older patients experienced greater

    satisfaction. Two physician behaviors related to patient perception of prognosis:

    "Identifying future tests and treatment" was related to a perceived better prognosis while

    "inquires about signs and symptoms" was associated with a worse prognosis. Only 5

    physician behaviors were found to occur more than 60% of the time: addressing the

    individual, inquiring about the patient's overall state, inquiring about signs and symptoms

    of illness, discussing tests and treatments, and touching the patient. Touching the patient

    is the only behavior related to support.

    Conclusions: How the patient perceives the interaction has a greater effect on satisfaction than

    actual physician behaviors. Older patients express greater satisfaction. The subjects the

    physicians inquired into also affect patient satisfaction.

D'Angelica M, Hirsch K, Ross H, Passik S, Brennan MF. Surgeon-patient communication in the

    treatment of pancreatic cancer. Arch Surg. 1998;133:962-966.

    Objective: To assess long- and short-term quality of surgeon-patient communication and to determine

    the surgeon's role in emotional support of patients with pancreatic cancer (PC). Design: Survey using a combination of telephone and mail.

    Setting: Urban tertiary cancer referral center.

    Subjects: Forty-eight patients who had experienced a pancreatic resection for PC.

Interventions: None.

    Measures: Patient satisfaction.

    Results: The amount of information provided both before surgery and during the hospital stay was

    rated as extremely satisfactory by patients. Physical actions found to be comforting to

    patients included direct eye contact, the surgeon sitting while speaking to the patient, and

    some form of physical contact.

    Conclusions: Surgeons are seen as desired emotional supports by patients. Patients are ill-prepared for

    long-term problems following surgery.

     Delbanco TL. Enriching the doctor-patient relationship by inviting the patient's perspective.

    Ann Intern Med. 1992;116:414-418.

    Description of Context: Many of the problems that occur within the patient-physician relationship

    involve feelings of anger and sadness related to the distancing that interferes with

    appropriate interactions. This relationship can be improved by both parties first engaging

    in a "patient's review," and then using survey instruments to measure each aspect of care. Topic/Scope: The patient's review focuses upon seven aspects that characterize the patient's perspective:

    - values, preferences, and expressed needs of the patient

    - the patient's coordination and integration of care

    - communication and education needs of the patient

    - the patient's physical level of comfort

    - the patient's available emotional supports

    - the level of involvement of family and friends

    - the continuity and transition of care

    The review allows the individual to be the focus of the report, and encourages the patient

    and the physician to confront and express personal differences while allowing the patient

    to take a more active role in his or her treatment. The review also lets the physician

    ascertain the patient's fears and anxieties in order to attempt alleviation. Conclusions/ Recommendations: The patient's review should be taught in the early years of medical

    school as it provides structure while allowing for an understanding of the whole person.

    Patients should also be encouraged to learn this method to enhance their own personal

    understanding. Survey instruments that seek patient input will promote an understanding

    of how well patient needs are addressed, and how care may be improved. Addressing

    these areas will promote a synergism between doctor and patient.

Fallowfield LJ. Communication skills of oncologists. Trends in Experimental and Clinical

    Medicine. 1995;5:99-103.

    Description of Context: Many patients are unhappy with the communication exchanges with their doctors.

    The process of a cancer diagnosis, treatment, and prognosis may result in possible

    emotional, relational, sexual, or occupational difficulties. Topic/Scope: Oncologists often fail to recognize even significant psychological distress. The

    physician's lack of response leads to more stress for the patient. Patients do not

    understand medical jargon, which, when combined with their own ideas and information

    presented by the media, leads to greater confusion and resultant distress. Characteristics

    of the patient, the doctor, and the system of cancer care delivery also contribute to the

    problem. Due to the role of the physician in society, the patient may not be comfortable

    asking the oncologist questions. The lack of information communicated to the patient

    initially, combined with the number of therapeutic options, may result in long-term

    adverse consequences. Five areas of communication are perceived to be most difficult for

    physicians: breaking bad news, obtaining informed consent for clinical trials, speaking

    with relatives, discussing treatment options, and addressing psychosocial issues.

Conclusions/Recommendations: Skills training may help address the problem, promoting basic

    communication techniques such as showing respect, concern, or empathy, as well as non-

    verbal and verbal caring.

     Ford S, Fallowfield L, Lewis S. Can oncologists detect distress in their out-patients and how

    satisfied are they with their performance during bad news consultations? Br J Cancer.

    1994;70:767-770.

    Objective: To assess the ability of oncologists to recognize distress in newly-referred out-patients

    and to measure their own satisfaction with their behavior during consultations concerning

    adverse news.

    Design: Self-report measures and clinical interviews.

    Setting: The medical oncology department of a London teaching hospital.

    Subjects: Five senior oncologists were assessed concerning their interactions with 101 patients at

    the first interview and 94 of the 101 at the second interview. Interventions: None.

    Measures: Each patient had two clinical interviews, approximately 1 month apart, with the same

    oncologist. Prior to the first interview, demographic information was collected. Before

    both the first and second interviews, psychological functioning was determined via the

    General Health Questionnaire and the Hospital Anxiety and Depression scale. At the end

    of each interview, the oncologist subjectively rated his/her personal performance. The

    oncologist's perceptions of patient distress were measured using 2 visual analogue scales. Results: The majority of physicians tended to under-rate patient distress. The more clinicians

    perceived patients to be distressed, the less satisfied they were with the interviews. As the

    oncologists usually under-rated patient distress, they were typically satisfied with the

    interviews.

    Conclusions: Oncologists tend to under-rate rather than over-rate patient distress and would benefit

    from improving their psychological assessment skills.

Goldberg R, Guadagnoli E, Silliman RA, Glicksman A. Cancer patients' concerns: Congruence

    between patients and primary care physicians. J Cancer Educ. 1990;5:193-199.

    Objective: To investigate similarities and differences between physician and cancer patient

    perceptions of issues related to the cancer experience of the patient. Design: Survey.

    Setting: Physicians and patients in Rhode Island.

    Subjects: One hundred and nineteen patients and 195 physicians returned the questionnaire.

    Interventions: None.

    Measures: A 43-item questionnaire was developed for this study with 8 domains of concern: physical

    function, social function, effects of cancer and its treatment, communication, information,

    emotional support, concrete services, and health behavior. Results: The results indicate statistically significant discrepancies between physician and cancer

    patient views of important issues involved in treatment. Physicians underestimated how

    important patients consider knowing what will happen if the cancer recurs, knowing

    whether they are cured, and knowing whether treatment will help. In the area of

    communication, physicians underestimated the importance patients place on deciding

    what new symptoms to bring to the doctor's attention, on comprehending what the doctor

    is saying, and on being able to talk openly. Physicians and patients rated equally the

    importance of general concerns about cancer epidemiology and its impact on social and

    emotional functioning. However, these items were rated less important overall when

    compared to communication items.

    Conclusions: Primary care physicians did not understand the importance placed by patients on many

    issues; thus, communication must improve to address these issues.

Lerman C, Daly M, Walsh WP. Communication between patients with breast cancer and health

    care providers. Cancer. 1993;72:2612-2620. Objective: To determine the prevalence and types of deficiencies in physician-patient communication

    as reported by the patient prior to postoperative therapy. Design: Used a survey methodology to identify those patients most likely to report communication

    difficulties, and to evaluate the relationship between patient-reported communication

    problems prior to postoperative therapy and psychological distress at the three month

    follow up visit.

    Setting: Fox Chase Cancer Center in Philadelphia, PA.

    Subjects: The sample included 97 women diagnosed with Stage I or II breast cancer. All had

    undergone primary surgical treatment for their disease, but had not begun postoperative

    therapy.

    Interventions: None.

    Measures: Demographic information was obtained from the medical records. Three coping styles

    were measured: fighting spirit, assertiveness, and a need for information. Measures used

    included the Fighting Spirit subscale of the Mental Adjustment to Cancer Scale, the

    Rathus Assertiveness Schedule, and the Miller Behavioral Style Scale. Patient-provider

    communication was evaluated using the Cancer Rehabilitation Evaluation System-

    Medical Interaction Subscales (CARES). Psychological distress was determined by the

    Profile of Mood States.

    Results: The majority (84%) of the patients endorsed items reflective of difficulties communicating

    with medical staff. Patients had difficulty comprehending provider-given information and

    many patients expressed difficulties with asking questions and expressing feelings to

    providers. Patients most likely to report communication problems had more distress, less

    optimism, and greater feelings of hopelessness concerning the disease. Patients who

    reported more communication problems prior to postoperative treatment experienced

    greater psychological distress both before postoperative therapy and at the three month

    follow up visit.

    Conclusions: Patients who ask questions receive greater amounts of information, thus reducing

    uncertainty, gaining reassurance, and receiving personalized advice. Improving physician-

    patient communication aids in improving the patient's adjustment to her disease.

    Communication may be enhanced through the utilization of interventions that lower

    patient distress and modify coping styles.

Maguire P. Improving communication with cancer patients. Eur J Cancer 1999;35:1415-1422.

    Description of Context: A review article summarizing research (Maguire's and others) in the field.

    Topic/Scope: Research is summarized by key communication tasks: eliciting patient's concerns,

     perceptions and feelings; breaking bad news; involving patients in treatment decisions;

     obtaining informed consent; and monitoring adverse reactions. Each section ends

     with a brief summary of findings. Barriers to effective communication and ways to

     improve communication with patients are reviewed, with major emphasis on training

     physicians.

    Conclusions: Physicians fail to elicit patient concerns, or block expression of concerns once asked.

    This reflects lack of skills training (eg, how to move on after empathy) but also attitudes

    or outcome expectancy - if I do this, bad things will happen - patient will cry, take up time,

    etc. Maguire has done most of the basic research on this and finds that training needs

    about 3 days of small group work and a 2-day booster 2-3 months later. His best results

    have been with coaching individual physicians as they see patients, improving their self-

    efficacy and outcomes expectancy with interviewing skills.

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