Impact of consultation recordings on patient-reported outcomes in patients with brain tumors: a parallel randomized controlled trial.

OBJECTIVE: We aimed to determine the impact of a primary treatment consultation recording on perception of being informed, satisfaction with cancer care, satisfaction with the oncologist, and psychological distress in patients with brain tumors. METHODS: This was a prospective, double-blind, parallel, randomized controlled trial conducted in 3 Canadian cities, in which patients who had their initial treatment consultation recorded were assigned to either receive their digital recording or not. It was hypothesized that patients who received their recording would realize statistically significant benefit on the outcomes of interest at 1 week, 3 months, and 6 months post-consultation in comparison to patients who did not receive their recording. Outcome measures included the following: Patient Satisfaction with Cancer Scale, Hospital Anxiety and Depression Scale, PrestMan Satisfaction with Doctor Scale, and Perception of Being Informed Scale. RESULTS: Of the 246 eligible patients, 133 participated (60.9% male; age M=52.4 years; 53.4% grade IV disease). Of these, 63 received their consultation recording and 70 did not. Intention-to-treat analysis showed that, compared to baseline, patients who received their consultation recording reported being more fully informed about their disease and treatment at 1 week post-consultation than patients who did not receive their recording (p = 0.007), but this finding was no longer significant at 3 and 6 months. There were no statistically significant differences observed between the two groups on the measures of satisfaction with cancer care, satisfaction with the doctor, and depression or anxiety at any assessment time point, though the study was under-powered. CONCLUSION: The study findings show that primary treatment consultation recordings may provide limited benefit beyond brain tumor patients' perception of being informed, despite being highly valued by these patients, and high listening rates among their significant others. The lack of statistical power should be considered when interpreting the findings. TRIAL REGISTRATION: ClinicalTrials.gov - NCT01866228.

Promoting consultation recording practice in oncology: identification of critical implementation factors and determination of patient benefit.

OBJECTIVE: The objectives of this implementation study were to (i) address the evidentiary, contextual, and facilitative mechanisms that serve to retard or promote the transfer and uptake of consultation recording use in oncology practice and (ii) follow patients during the first few days following receipt of the consultation recording to document, from the patient's perspective, the benefits realized from listening to the recording. METHODS: Nine medical and nine radiation oncologists from cancer centers in three Canadian cities (Calgary, Vancouver, and Winnipeg) recorded their primary consultations for 228 patients newly diagnosed with breast (n = 174) or prostate cancer (n = 54). The Digital Recording Use Semi-Structured Interview was conducted at 2 days and 1 week postconsultation. Each oncologist was provided a feedback letter summarizing the consultation recording benefits reported by their patients. RESULTS: Sixty-nine percent of patients listened to at least a portion of the recording within the first week following the consultation. Consultation recording favorableness ratings were high: 93.6% rated the intervention between 75 and 100 on a 100-point scale. Four main areas of benefit were reported: (i) anxiety reduction; (ii) enhanced retention of information; (iii) better informed decision making; and (iv) improved communication with family members. Eight fundamental components of successful implementation of consultation recording practice were identified. CONCLUSIONS: Further randomized trials are recommended, using standardized measures of the patient-reported benefit outcomes reported herein, to strengthen the evidence base for consultation recording use in oncology practice.

Anxiety, depression and defense mechanisms associated with treatment decisional preferences and quality of life in non-metastatic breast cancer: a 1-year prospective study.

OBJECTIVE: Treatment decisional preferences impact breast cancer patients' health-related quality of life (HRQoL) and may relate to psychological variables, although many aspects of this relationship remain unknown. This prospective study aimed to assess psychological correlates of treatment decisional preferences and predictors of HRQoL in women with early non-metastatic breast cancer. METHODS: Of the 124 women initially assessed for anxiety (Spielberger's State-Trait Anxiety Inventory) and depressive (Center for Epidemiologic Studies-Depression (CES-D)) symptoms, HRQoL (WHOQOL-BREF), and defense mechanisms (Life Style Index), 82 (66.1%) completed the 1-year follow-up. Mean age was 54.6 years (SD = 9.76), and mean disease duration was 19.4 months (SD = 25.55); 19.5% had stage I, 63.4% stage II and 17.1% stage III disease. The predictive power and moderator effects of psychological variables were tested using multiple and hierarchical regression models. RESULTS: Depressive symptoms and physical HRQoL improved significantly, state anxiety and mental and environment HRQoL remained stable, and social relations HRQoL deteriorated over the 1-year period. Older age (p = 0.021) and higher scores in repression defense (p = 0.044) were independently associated with passive decisional preferences. Earlier stage of cancer (p = 0.043), lower state anxiety (p = 0.039), lower repression scores (p = 0.021) and improvement in depressive symptoms (p < 0.001) predicted physical HRQoL improvement. Moderation analysis showed that active decisional preferences predicted physical HRQoL improvement, but only in those women with lower repression levels. CONCLUSIONS: Defense mechanisms are associated with treatment decisional preferences and interact with factors predicting HRQoL in women with breast cancer. Clinicians should address the patients' anxiety and depressive symptoms and refer patients with high repression tendencies for psychological evaluation and management.

Behind closed doors II: systematic analysis of prostate cancer patients' primary treatment consultations with radiation oncologists and predictors of satisfaction with communication.

OBJECTIVE: The purpose of this investigation was to explicate the content of primary treatment consultations in prostate oncology and examine the predictive relationships between patient, significant other, and oncologist consultation factors and patient satisfaction with communication. METHODS: The recorded consultations of 156 newly diagnosed prostate cancer patients from three Canadian cancer centers were examined using the Medical Interaction Process System (MIPS). The MIPS findings, independent observer ratings of patient, significant other, and oncologist affective behavior, and derived consultation ratios of patient centeredness, patient directedness, and psychosocial focus, were used to predict patient satisfaction with communication post-consultation and at 12-weeks post-consultation. RESULTS: Biomedical content categories were predominant in the consultations, accounting for 86% of utterances, followed by administrative (9%) and psychosocial (5%) utterances. Post-consultation satisfaction with communication was significantly lower for patients whose significant others were rated as more assertive during the consultation, and those rated as more anxious during the consultation. Patients who were rated as more anxious during the consultation, those with lower satisfaction with communication immediately post-consultation and those with shorter consultations were significantly less satisfied with communication at 12-weeks post-consultation. CONCLUSIONS: Adjuvant treatment consultations in prostate oncology are characterized by a high degree of information-giving by the physician, a predominance of biomedical discussion, and relatively minimal time addressing patients' psychosocial concerns. Patients may benefit from oncologists who address anxiety and emotional distress during the primary treatment consultation, allowing sufficient time to ensure that patients leave the consultation with their communication needs having been satisfied.

Decision-making preferences and information needs among Greek breast cancer patients.

OBJECTIVES: We aimed at assessing Greek breast cancer patients' preferences for participation in treatment decision making and their information needs. METHODS: In a cross-sectional study, 329 breast cancer patients were administered at the Control Preferences Scale, a card-sort measurement designed to elicit preferences for participation in decision making. Information needs were assessed with Cassileth's Information Styles Questionnaire. RESULTS: The majority of patients (71.1%) preferred to play a passive role in treatment decision making, with most of them wanting to delegate responsibility of the decision completely to their doctor (45.3%). A collaborative role was preferred by 24%, whereas only 4.6% chose an active role. Most women expressed a general desire for as much information as possible about their illness (62.6%), but a substantial proportion (37.4%) did not want detailed information; instead, they wished to avoid awareness of bad news. Women who desired less informational details and preferred a passive role requested less frequently a mammography (p<0.001) and/or Pap test (p<0.0005) prediagnostically. CONCLUSIONS: This study's findings showed that the proportion of patients who wanted to play a passive role in decision making is the highest reported compared to similar studies from other countries, indicating the impact of the dominating paternalistic model of the doctor-patient relationship in the Greek medical encounter. The association of desired information details and decision-making preferences with screening for cancer procedures prediagnostically highlights the significance of providing the patients with the appropriate information and the choices available for their treatment.

Facilitating the implementation of empirically valid interventions in psychosocial oncology and supportive care.

PURPOSE: Over the past two decades, the fields of psychosocial oncology and supportive care have seen clinically effective tools as underutilized despite proven benefits to cancer patients and their families. The purpose of this paper is to discuss the reasons for the failure of psychosocial and supportive care interventions in oncology to realize broad clinical implementation and to demonstrate how a knowledge management framework offers several advantages for increasing the probability of successful implementation. METHODS: This paper is based on a systematic review of the literature pertaining to efforts to implement psychosocial oncology and supportive care interventions. RESULTS: The struggle to develop, implement, and evaluate promising psychosocial oncology and supportive care innovations has moved academic thought toward the development of models and theories concerning the best ways to move new knowledge into clinical practice. There are critical and common barriers to the successful transfer and implementation of promising interventions, and implementation efforts may be maximized by using knowledge management frameworks to systematically identify and address these barriers. CONCLUSIONS: The successful implementation of empirically promising interventions requires research networks and practice groups to work together in a concerted, theory-guided effort to identify and address the contextual factors most relevant to any particular intervention. The growing support of knowledge implementation activities by research funders, policy-makers, opinion leaders, and advocates of psychosocial and supportive care interventions is a positive move in this direction.

Predictors of distress and quality of life in patients undergoing cancer therapy: impact of treatment type and decisional role.

PURPOSE: The purpose of this secondary investigation was to examine the impact of the type of treatment received and the perceived role in treatment decision making in predicting distress and cancer-specific quality of life in patients newly diagnosed with breast or prostate cancer. METHOD: Participants included 1057 newly diagnosed breast and prostate cancer patients from four Canadian cancer centers who partook in a randomized controlled trial examining the utility of providing patients with an audio-recording of their treatment planning consultation. A MANCOVA was performed to predict distress and cancer-specific quality of life at 12 weeks post-consultation based on control variables (patient age, education, residence, tumor size (breast sample), gleason score (prostate sample), and receipt of an initial treatment consultation recording), predictor variables (treatment type--chemotherapy, hormone therapy, radiation therapy; decisional role--active, collaborative, passive), and interactions between these predictors. RESULTS: Women who received chemotherapy and reported having played a more passive role in treatment decision making had significantly greater distress and lower cancer-specific quality of life at 12-week post-consultation. There were no statistically significant predictors of these outcomes identified for men with prostate cancer. CONCLUSION: Receipt of chemotherapy places women with breast cancer at risk for distress and reduced quality of life, but only for the subset of women who report playing a passive role in treatment decision making. Prospective, longitudinal studies are needed to confirm the present findings and to explicate the antecedents, composition, and consequences of the 'passive' decisional role during the treatment phase of the cancer trajectory.

Behind closed doors: systematic analysis of breast cancer consultation communication and predictors of satisfaction with communication.

OBJECTIVE: The purpose of this investigation was to explicate the content of primary adjuvant treatment consultations in breast oncology and examine the predictive relationships between patient and oncologist consultation factors and patient satisfaction with communication. METHODS: The recorded consultations of 172 newly diagnosed breast cancer patients from four Canadian cancer centers were randomly drawn from a larger subset of 481 recordings and examined by three coders using the Medical Interaction Process System (MIPS); a system that categorizes the content and mode of each distinct utterance. The MIPS findings, independent observer ratings of patient and oncologist affective behavior, and derived consultation ratios of patient centeredness, patient directedness, and psychosocial focus, were used to predict patient satisfaction with communication post-consultation and at 12-weeks post-consultation. RESULTS: Biomedical content categories were predominant in the consultations, accounting for 88% of all utterances, followed by administrative (6%) and psychosocial (6%) utterances. Post-consultation satisfaction with communication was significantly higher for older patients, those with smaller primary tumors and those with longer consultations. Smaller tumor, lack of patient assertiveness during the treatment consultation and having the consultation with a radiation rather than medical oncologist were significantly predictive of greater satisfaction at 12-weeks post-consultation. CONCLUSIONS: Adjuvant treatment consultations are characterized by a high degree of information-giving by the physician, a predominance of biomedical discussion and relatively minimal time addressing patients' psychosocial concerns. Controlled trials are needed to further identify and address the contextual features of these consultations that enhance patient satisfaction.

Uncertainty after treatment for prostate cancer: definition, assessment, and management.

Prostate cancer is the second most common type of cancer in men living in the United States and the most common type of malignancy in Canadian men, accounting for 186,320 new cases in the United States and 24,700 in Canada in 2008. Uncertainty, a component of all illness experiences, influences how men perceive the processes of treatment and adaptation. The Reconceptualized Uncertainty in Illness Theory explains the chronic nature of uncertainty in cancer survivorship by describing a shift from an emergent acute phase of uncertainty in survivors to a new level of uncertainty that is no longer acute and becomes a part of daily life. Proper assessment of certainty and uncertainty may allow nurses to maximize the effectiveness of patient-provider communication, cognitive reframing, and problem-solving interventions to reduce uncertainty after cancer treatment.

Symptom experiences: perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting.

PURPOSE: This study used a comparative descriptive design to compare family caregivers' and advanced-stage cancer patients' perceptions of patients' multidimensional symptom experiences on presence, frequency, severity, and distress. PATIENTS AND METHODS: A convenience sample of 98 dyads, composed of advanced-stage heterogeneous cancer patients and their caregivers, completed the Memorial Symptom Assessment Scale in the home care setting on a one-time basis. This scale is a 32-item Likert-type scale for assessing the presence, frequency, severity, and distress arising from symptoms in cancer patients. RESULTS: There was confirmation of trends previously described in related studies where, for example, caregivers tend to overreport on symptom experiences. However, the degree of absolute difference between patient and caregiver responses was normally around 1 unit (on a theoretical range of 0 to 4 units). Levels of patient-caregiver agreement were better on more concrete questions related to symptom frequency, severity, and distress than on broad questions related to the presence of a symptom. Patients and caregivers achieved better levels of agreement on physical versus psychological symptoms. CONCLUSION: The findings indicated that family caregivers can provide reasonable proxy or complementary reports on patient symptom experiences of frequency, severity, and distress. However, family caregivers have greater difficulty in achieving high levels of accuracy on psychological versus physical symptoms.

Impact of providing audiotapes of primary adjuvant treatment consultations to women with breast cancer: a multisite, randomized, controlled trial.

PURPOSE: Women with breast cancer were provided with an audiotape of their primary adjuvant treatment consultation, and the following patient outcomes were measured at 12 weeks postconsultation: perceived degree of information provision, audiotape satisfaction and use, communication satisfaction with oncologist, mood state, and cancer-specific quality of life. PATIENTS AND METHODS: Participants included 628 women newly diagnosed with breast cancer and 40 oncologists from six cancer centers in Canada. The patients were block randomized to one of four consultation groups: standard care control, not audiotaped; audiotaped, no audiotape given; audiotaped, patient given audiotape; and audiotaped, patient offered choice of receiving audiotape or not. RESULTS: Patients receiving the consultation audiotape had significantly better recall of having discussed side effects of treatment than patients who did not receive the audiotape. Audiotape benefit was not significantly related to patient satisfaction with communication, mood state, or quality of life at 12 weeks postconsultation, and was not significantly affected by choice of receiving the audiotape. Patients rated the audiotape intervention positively, with an average score of 83.9 of 100. CONCLUSION: Audiotape provision benefits patients by facilitating their perception of being informed about treatment side effects, but does not significantly influence patient satisfaction with communication, mood state, or quality of life.

Patients with cancer and next-of-kin response comparability on physical and psychological symptom well-being: trends and measurement issues.

Next of kin (NOK) play an integral role in fostering optimal quality of life in symptomatic patients who are coping with cancer in the home setting. Often when patients in advanced stages of cancer are no longer able to meaningfully communicate their illness and symptom needs, healthcare professionals turn to NOK to provide sound estimates of patients' symptom experiences. This overview is based on 37 research studies written between 1987 and 2002 and updates an earlier overview of 13 studies on patient-NOK response comparability. The purpose is to, first, promote a better comprehension of methodologies and statistical techniques commonly employed to measure patterns of response comparability (or levels of agreement) between patient self-reports and NOK estimates on patient quality-of-life experiences of physical or symptom and emotional or psychological well-being. The second aim is to identify conditions where NOK may pose as reasonably accurate judges of patients' health-related quality of life, particularly symptom experiences arising from various diagnoses, including cancer. Third, subsequent to identifying the gaps in current research knowledge and limitations in study designs, recommendations for statistical and methodological techniques are outlined.

Feasibility of using a computer-assisted intervention to enhance the way women with breast cancer communicate with their physicians.

This study was conducted to evaluate the feasibility of using a computer intervention to enhance communication between healthcare professionals and women with breast cancer. Additional aims were to measure the extent to which women achieved their preferred decisional roles and satisfaction with the clinical medical appointment. This two-arm randomized clinical trial design included a convenience sample of 749 women with breast cancer attending 3 urban Canadian outpatient oncology clinics. Most women were older than 50 years and had a high school diploma or greater (57%). Women in the control group completed measures of decision preference before their clinic appointments. Women in the intervention group were encouraged to use the information and decision preference profiles generated by the computer program at their clinic appointments. Levels of involvement in decision making and satisfaction were measured after the clinic appointments. Results showed that although the majority of women in both groups did assume their preferred roles in decision making, a significantly higher proportion of women in the intervention group reported playing a more passive role than originally planned. Both groups reported high satisfaction levels. Future research is required to study how this computer intervention could be used by clinicians to provide information and decision support to these women.

A new approach to eliciting meaning in the context of breast cancer.

A semistructured measure was developed from early descriptive work by Lipowski to elicit the meaning of breast cancer using eight preset categories: challenge, enemy, punishment, weakness, relief, strategy, irreparable loss, and value. This measure was applied in two studies: a cross-sectional survey of 1012 Canadian women at various points after diagnosis and a follow-up study 3 years later of 205 women from the previous study who were close to the time of diagnosis at the first testing. The majority of the 1012 women chose "challenge" (57.4%) or "value" (27.6%) to describe the meaning of breast cancer, whereas fewer chose the more negative "enemy" (7.8%) or "irreparable loss" (3.9%). At the 3-year follow-up assessment, 78.9% of the women who had indicated positive meaning by their choices of "challenge" or "value" did so again. Verbal descriptions provided by the women were congruent with those reported in previous qualitative studies of meaning in breast cancer with respect to the two most prevalent categories: challenge and value. At follow-up assessment, women who ascribed a negative meaning of illness with choices such as "enemy," "loss," or "punishment" had significantly higher levels of depression and anxiety and poorer quality of life than women who indicated a more positive meaning. The meaning-of-illness measure provides an approach that can be applied in large surveys to detect women who ascribe less positive meaning to the breast cancer experience, women who may be difficult to identify in the context of small, qualitative studies.

Assessing information and decision preferences of men with prostate cancer and their partners.

The purpose of this study was to identify and compare information and decision preferences of men with prostate cancer and their partners at the time of diagnosis. A convenience sample of 80 couples was recruited from The Prostate Centre in Vancouver, Canada. Participants used a computerized version of two previously used measures with this population: Control Preferences Scale and Information Survey Questionnaire. Results showed that men had a preference to play either an active or a collaborative role in decision making with their physician (92.5%) and partners (100%). The majority (55%) of partners wanted to play a collaborative role in treatment decision making. Couples identified prognosis, stage of disease, treatment options, and side effects as the top 4 information preferences. Men ranked information on sexuality more important than partners, and partners ranked information on home self-care higher than men. Men who had sons, a positive family history, and lower levels of education ranked heredity risk significantly higher. Profiles of information categories did not differ according to role preferences of either men or partners. The computer program has been shown to be a reliable and acceptable method of assessing information and decision preferences of these couples. An individualized approach is suggested, given the high reliability of individual's profiles.

Family responses to declining intake and weight loss in a terminally ill relative. Part 1: fighting back.

We recently completed a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n=13), families (n=23), and health care providers (n=11) (1). That work generated important information about adult family members' perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit. An overview of the inductively derived model that emerged from that work has been reported elsewhere (2). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative-the sub-process of "fighting back: it's best to eat." The strategies family members use when fighting back, and the consequences of these strategies for patients, family members, and health care providers are reported. Implications for practice and research are provided.

Study protocol: addressing evidence and context to facilitate transfer and uptake of consultation recording use in oncology: a knowledge translation implementation study.

BACKGROUND: The time period from diagnosis to the end of treatment is challenging for newly diagnosed cancer patients. Patients have a substantial need for information, decision aids, and psychosocial support. Recordings of initial oncology consultations improve information recall, reduce anxiety, enhance patient satisfaction with communication, and increase patients' perceptions that the essential aspects of their disease and treatment have been addressed during the consultation. Despite the research evidence supporting the provision of consultation recordings, uptake of this intervention into oncology practice has been slow. The primary aim of this project is to conduct an implementation study to explicate the contextual factors, including use of evidence, that facilitate and impede the transfer and uptake of consultation-recording use in a sample of patients newly diagnosed with breast or prostate cancer. METHODS: Sixteen oncologists from cancer centres in three Canadian cities will participate in this three-phase study. The preimplementation phase will be used to identify and address those factors that are fundamental to facilitating the smooth adoption and delivery of the intervention during the implementation phase. During the implementation phase, breast and prostate cancer patients will receive a recording of their initial oncology consultation to take home. Patient interviews will be conducted in the days following the consultation to gather feedback on the benefits of the intervention. Patients will complete the Digital Recording Use Semi-Structured Interview (DRUSSI) and be invited to participate in focus groups in which their experiences with the consultation recording will be explored. Oncologists will receive a summary letter detailing the benefits voiced by their patients. The postimplementation phase includes a conceptual framework development meeting and a seven-point dissemination strategy. DISCUSSION: Consultation recording has been used in oncology, family medicine, and other medicine specialties, and despite affirming evidence and probable applications to a large number of diseases and a variety of clinical contexts, clinical adoption of this intervention has been slow. The proposed study findings will advance our conceptual knowledge of the ways to enhance uptake of consultation recordings in oncology.

Penile length shortening after radical prostatectomy: men's responses.

BACKGROUND: Prostate cancer (PC) is the most common type of male-specific cancer in North American men, and many men choose radical prostatectomy (RP) to remove their cancer. Although penile length shortening (PLS) occurs in a reported 68% to 71% of men undergoing RP, little is known about it. In an electronic journal search, only 9 medical articles (with no nursing publications) were published between 1980 and 2007. PURPOSE: To provide an account of patients' perceptions and responses to living with PLS after RP. METHODS AND SAMPLE: Semi-structured interviews and a grounded theory approach were used to discover the basic social processes regarding men's perceptions of a shortened penis and overall sense of self. A total of six men who underwent RP and consequently noticed PLS were recruited from a local PC support group for semi-structured interviews lasting between 40-60 min. RESULTS: Based on subjects' own definitions of masculinity, no significant changes in the constructs of masculinity and overall self-image perception were reported. CONCLUSIONS: Men undergoing RP may not be fully aware that PLS is a possible consequence related to treatment. In spite of this, subjects were not negatively affected by its occurrence.