The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol.

BACKGROUND: Quebec is one of the Canadian provinces with the highest rates of cancer incidence and prevalence. A study by the Rossy Cancer Network (RCN) of McGill university assessed six aspects of the patient experience among cancer patients and found that emotional support is the aspect most lacking. To improve this support, trained patient advisors (PAs) can be included as full-fledged members of the healthcare team, given that PA can rely on their knowledge with experiencing the disease and from using health and social care services to accompany cancer patients, they could help to round out the health and social care services offer in oncology. However, the feasibility of integrating PAs in clinical oncology teams has not been studied. In this multisite study, we will explore how to integrate PAs in clinical oncology teams and, under what conditions this can be successfully done. We aim to better understand effects of this PA intervention on patients, on the PAs themselves, the health and social care team, the administrators, and on the organization of services and to identify associated ethical and legal issues. METHODS/DESIGN: We will conduct six mixed methods longitudinal case studies. Qualitative data will be used to study the integration of the PAs into clinical oncology teams and to identify the factors that are facilitators and inhibitors of the process, the associated ethical and legal issues, and the challenges that the PAs experience. Quantitative data will be used to assess effects on patients, PAs and team members, if any, of the PA intervention. The results will be used to support oncology programs in the integration of PAs into their healthcare teams and to design a future randomized pragmatic trial to evaluate the impact of PAs as full-fledged members of clinical oncology teams on cancer patients' experience of emotional support throughout their care trajectory. DISCUSSION: This study will be the first to integrate PAs as full-fledged members of the clinical oncology team and to assess possible clinical and organizational level effects. Given the unique role of PAs, this study will complement the body of research on peer support and patient navigation. An additional innovative aspect of this study will be consideration of the ethical and legal issues at stake and how to address them in the health care organizations.

Gender differences in how physicians access and process information.

There is an absence of information on how physicians make surgical decisions, and on the effect of gender on the processing of information. A novel web based decision-matrix software was designed to trace experimentally the process of decision making in medical situations. The scenarios included a crisis and non-crisis simulation for endometrial cancer surgery. Gynecologic oncologists, fellows, and residents (42 male and 42 female) in Canada participated in this experiment. Overall, male physicians used more heuristics, whereas female physicians were more comprehensive in accessing clinical information (p < 0.03), utilized alternative-based acquisition processes in the non-crisis scenario (p = 0.01), were less likely to consider procedure-related costs (p = 0.04), and overall allocated more time to evaluate the information (p < 0.01). Further experiments leading to a better understanding of the cognitive processes involved in medical decision making could influence education and training and impact on patient outcome.

The experience of pain and anxiety in rectal cancer patients during high-dose-rate brachytherapy.

BACKGROUND: Pain and anxiety have been reported as primary concerns for patients with head-and-neck, gynecologic, and prostate cancers undergoing high dose rate (hdr) brachytherapy. However, almost no research has been published on the degree to which these symptoms are experienced by rectal cancer patients undergoing hdr brachytherapy. We conducted a pilot study examining the experiences of rectal cancer patients during hdr brachytherapy, specifically the intensity and trajectory of their anxiety and pain. METHODS: Rectal cancer patients (n = 25) who received hdr brachytherapy treatment at a hospital in Montreal, Quebec, completed verbal analog scales for pain and anxiety at 4 time points over 4 treatment days. RESULTS: On all 4 days, a subset of patients reported moderate-to-severe anxiety before applicator insertion. Pain increased significantly from the time patients were lying on the table to immediately after insertion of the applicator (p < 0.001). Insertion of the applicator appears to be the most painful part of the procedure, and although anxiety declined to below baseline after applicator removal, pain remained somewhat elevated. Some patients required conscious sedation; however, reports of moderate-to-severe pain were more frequent from patients who received pain medications than from patients who did not receive such medication (p < 0.05). CONCLUSIONS: Most patients with rectal cancer tolerated hdr rectal brachytherapy well, although the procedure is stressful and painful for some. Insertion of the applicator was found to be the point of maximal pain, and medication was not always completely successful at alleviating the pain, suggesting that additional psychosocial interventions might be needed, with particular emphasis on the time of applicator insertion.

HPV vaccine education: enhancing knowledge and attitudes of community counselors and educators.

Educational efforts targeting parents of preadolescents may help them make informed decisions about having their children vaccinated against the human papillomavirus (HPV). We conducted a pilot study examining knowledge, attitudes, and beliefs of community-based health educators and counselors who routinely disseminate sexual health and prevention information through counseling and supporting these parents. We evaluated the impact of a single, brief workshop by administering questionnaires before and after the session. The workshop consisted of an educational intervention that was presented orally by an expert in gynecological oncology and was followed by an open discussion period. Following the information and discussion session, improvements were seen in knowledge accuracy, confidence in being able to discuss HPV vaccine issues with parents, greater willingness to recommend the vaccine, and a better understanding of potential barriers to vaccine uptake. These results suggest that health educators and counselors may be better prepared to encourage their clients to make well-informed decisions regarding HPV vaccination.

Lessons learned: Outcomes and methodology of a coping skills intervention trial comparing individual and group formats for patients with cancer.

OBJECTIVE: Nucare, a short-term psychoeducational coping skills training intervention was evaluated in a randomized controlled clinical trial (RCT) of 225 newly diagnosed breast and colon cancer patients. METHOD: Measures of psychosocial distress, well being and optimism were evaluated every four months during a one-year period. Patients were randomized to one of four arms: Nucare presented in an individual basis; Nucare presented in a group format; a non-directive supportive group; and a no-intervention control. The interventions were provided in five sessions of ninety minutes each. RESULTS: Patients with breast cancer who received Nucare presented in an individual format showed more significant improvements in well-being over time compared to those in the control and group arms. CONCLUSIONS: We were unable to develop functioning groups within the RCT. Partial explanations for the latter finding include the structural limitations of the RCT: the groups were small, difficult to schedule and patients indicated that they would have preferred to choose whether or not to participate in a group. The positive changes in women with breast cancer who received Nucare persisted at 12 months.

Resource use in women completing treatment for breast cancer.

OBJECTIVE: To explore resources used by women completing treatment for breast cancer, how they learned about them, and the psychological factors that predicted their use. DESIGN: A questionnaire on resource use was administered as part of a randomized clinical trial which assessed subjects' psychosocial characteristics and tested the outcomes of a psychosocial intervention. SETTING: Women completing treatment for breast cancer were recruited from the oncology departments of three university-teaching hospitals in Montreal. A questionnaire gathered data on the resources used by the subjects, how they learned about them, and the role of the health care team in their decision-making. Emotional distress, dimensions of coping effort, a sense of control and optimism were also measured. RESULTS: Five categories of resources were explored; professional services, informal support networks, informational resources, support organizations and complementary therapies. Most women found out about the last two resources by themselves. Women who used cancer support organizations or complementary therapies scored high on the use of problem-solving coping and low on the use of escape/avoidance coping. In addition they were moderately optimistic, had a slightly lower sense of personal control and were somewhat more distressed than the non-users. The use of support organizations and complementary therapies appears to represent a thoughtful approach to dealing with the distress of cancer. The opinion of the oncologist regarding resource use was valued by nearly half of the sample.

Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients.

The purpose of this paper was to determine if providing patient specific Quality of Life (QL) information to clinic staff before a clinic appointment improved patient care in a lung cancer outpatient clinic. Patients were sequentially assigned to either a usual care control group or the experimental group, which completed a computerized version of the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire in order to provide the clinic staff with QL information prior to the clinic appointment. The control group completed the EORTC QLQ-C30 paper version after the clinic appointment. Outcome measures were patient satisfaction, the degree to which issues identified on the QL questionnaire were addressed in the appointment, and a chart audit, which measured charting of QL issues and actions taken by the clincian relating to QL. In the experimental group, more QL issues identified by the patient on the EORTC QLQ-C30 were addressed during the clinic appointment than in the control group. As well, marginally more categories were charted and a trend towards more actions being taken was seen in the experimental group. Patients reported being equally and highly satisfied with the treatment in both groups. The clinical implication is that the computerized administration of the EORTC QLQ-C30 questionnaire and providing staff with a report highlighting patient-specific QL deficits is a simple, time-effective and acceptable means of improving patient-provider communication in a busy outpatient clinic. Large trials studying its effectiveness in different patient populations and regions would further elucidate the nature of this effect and potentially improve the overall quality of care that patients receive.

Do therapist experience, diagnosis and functional level predict outcome in short term psychotherapy?

The purpose of this study was to investigate the effects of clinical diagnosis, functional level and therapist experience on the outcome of brief psychotherapy. Patients (N = 123) were clinically diagnosed and assigned to either a psychiatrist, psychiatry resident, family practice resident or medical student. Global Assessment of Functioning (GAF) scores and the Global Severity Index (GSI) of the SCL-90 were rated at baseline, at the end of therapy and at six month follow-up. The Client Satisfaction Questionnaire was also scored after therapy. All groups of patients improved significantly. Neither therapist type and diagnostic category nor their interaction were related to outcome GAF or to GSI. Patients improved irrespective of their baseline symptom severity. Satisfaction with therapy was highly related ot increased functioning and decreased symptom severity. The number of therapy sessions attended by patients was modestly related to outcome and patient satisfaction. The results suggest that many diagnostic groups benefit from brief psychotherapy administered by therapists of varying experience. Furthermore, the results support the practice of having medical students conduct psychotherapy under supervision during their training.

Coping with cancer during the first year after diagnosis. Assessment and intervention.

The emotional coping of 205 patients newly diagnosed with cancer was evaluated every 4 months during a 1-year period. Patients received a psychosocial intervention either immediately (early intervention, EI), or after a 4-month delay (later intervention, LI). No significant differences were found between the two groups, except at 8 months, when the LI group was significantly less depressed, anxious, and worried, and felt more in control than the EI group. The LI group continued to have less worry related to illness at 12 months. Patients with high ego strength had low levels of distress at baseline and may not have needed the intervention. The emotional coping of patients with breast cancer improved during the year regardless of the intervention timing. Patients with other diagnoses appeared to benefit most from the IL. It was concluded that patients with low ego strength and diagnoses other than breast cancer might be at higher risk for psychosocial complications and could benefit from the intervention.

New approaches to measuring nausea.

Valid measures of nausea are needed to evaluate the various treatments used to counter the nausea produced by chemotherapy. The overall nausea intensity (ONI) produced by 17 chemotherapy drugs was estimated by 17 physicians and 8 nurses, and 25 patients undergoing chemotherapy described the subjective qualities and ONI of their nausea on a modified form of the McGill Pain Questionnaire. The scores for the affective and miscellaneous categories of words in the questionnaire were found to correlate significantly with the physicians' and nurses' ONI estimates. The results formed the basis for the Nausea Questionnaire, which provided three indices of nausea: a nausea rating index (NRI), ONI and intensity of nausea according to a visual analogue scale (VAS). All three indices correlated significantly with the physicians' and nurses' ONI estimates and were significantly intercorrelated. All three also provided significant differences when the scores of patients who had received cisplatin or 5-fluorouracil were compared. The results indicate that the Nausea Questionnaire provides three valid indices of the subjective experience of nausea.