Information needs of patients with cancer: results from a large study in UK cancer centres

As part of a multi-centred study evaluating a communication skills training model for clinicians, we collected information preferences using an adaptation of Cassileth's Information Needs questionnaire from a heterogeneous sample of 2331 patients. Results showed that 87% (2027) wanted all possible information, both good and bad news and 98% (2203) preferred to know whether or not their illness was cancer. Cross tabulation of responses revealed no significant differences in information preferences for tumour site or treatment aims but did show an effect of age and sex. The few 58/440 (13.2%) patients who stated that in general they preferred to leave disclosure of details up to the doctor, tended to be older patients more than 70 years of age (chi square = 26.01, df = 2, P< 0.0001), although paradoxically they still wanted to know certain specific details. In comparison to men women preferred to know the specific name of the illness (chi square = 4.9, df = 1, P< 0.02) and what were all the possible treatments (chi square = 8.26, df = 1, P< 0.004). The results from this very large sample provide conclusive evidence that the vast majority of patients with cancer want a great deal of specific information concerning their illness and treatment. Failure to disclose such information on the grounds that significant numbers of patients prefer not to know is untenable. © 2001 Cancer Research Campaign http://www.bjcancer.co

[Editorial] Too hot, too cold or can we get it just right? What emotional distance should oncologists keep from their patients?

Cancer clinicians frequently deal with emotionally challenging situations such as discussing the diagnosis or prognosis and transitions to palliative care with patients and their families. The doctor/patient relationship may be short and intensive or one lasting for many years. Until fairly recently, a formal paternalistic relationship was the norm in medicine; this has now been replaced by a more patient-centred approach. An unintended consequence of the move towards less formal relationships may be the loss of the emotional protection to the doctor

Do drugs offering only PFS maintain quality of life sufficiently from a patient's perspective? Results from AVALPROFS (Assessing the 'VALue' to patients of PROgression Free Survival) study.

PURPOSE: Trials of novel drugs used in advanced disease often show only progression-free survival or modest overall survival benefits. Hypothetical studies suggest that stabilisation of metastatic disease and/or symptom burden are worth treatment-related side effects. We examined this premise contemporaneously using qualitative and quantitative methods. METHODS: Patients with metastatic cancers expected to live > 6 months and prescribed drugs aimed at cancer control were interviewed: at baseline, at 6 weeks, at progression, and if treatment was stopped for toxicity. They also completed Functional Assessment of Cancer Therapy (FACT-G) plus Anti-Angiogenesis (AA) subscale questionnaires at baseline then monthly for 6 months. RESULTS: Ninety out of 120 (75%) eligible patients participated: 41 (45%) remained on study for 6 months, 36 progressed or died, 4 had treatment breaks, and 9 withdrew due to toxicity. By 6 weeks, 66/69 (96%) patients were experiencing side effects which impacted their activities. Low QoL scores at baseline did not predict a higher risk of death or dropout. At 6-week interviews, as the side effect severity increased, patients were significantly less inclined to view the benefit of cancer control as worthwhile (X2 = 50.7, P < 0.001). Emotional well-being initially improved from baseline by 10 weeks, then gradually returned to baseline levels. CONCLUSION: Maintaining QoL is vital to most patients with advanced cancer so minimising treatment-related side effects is essential. As side effect severity increased, drugs that controlled cancer for short periods were not viewed as worthwhile. Patients need to have the therapeutic aims of further anti-cancer treatment explained honestly and sensitively

Talking about risk in the context of genomic tests (TARGET): development and evaluation of an educational programme for clinicians

Purpose: Gene expression profiling (GEP) test scores calculate risks of recurrence and likely benefit of adjuvant chemotherapy in ER positive, HER2 negative, early stage breast cancer. As health literacy and numeracy skills in the general population are poor, healthcare professionals (HCPs) require a wide repertoire of communication skills to explain clearly risk of recurrence scores (RSs) and uncertainty. We developed and evaluated an educational program for HCPs discussing GEP test results and adjuvant treatment. Methods: Eight hour workshops contained elements aimed at improving knowledge, communication skills, and self-awareness; these included:- the science underpinning GEP tests, an interactive risk psychology lecture, exercises and facilitated group discussions regarding 7 filmed scenarios involving discussions about high, intermediate and low RSs. Attendees were recorded explaining RSs with patient simulators pre and post workshop. Researchers blinded to time-point, analysed recordings using a study specific scoring system. Primary objective outcomes were improvements post workshop in HCPs’ competence and confidence when communicating 17 pre-specified key information areas. We estimated odds ratios (OR) using conditional logistic regression to compare pre and post workshop scores. Results: 65 HCPs attended. Objective analyses revealed significant positive shifts post-workshop which included explaining:- GEP tests (OR=2.98; 95% CI, 1.38 to 6.42; P=.001), recurrence RSs (OR=3.99; 95% CI, 1.72 to 9.25; P<.001), benefits of chemotherapy (OR= 3.99; 95% CI, 1.82 to 8.75; P<.001; and harms OR=2.31; 95% CI, 1.37 to 3.92; P<.001) using jargon free language (OR=5.29; 95% CI, 2.27 to 12.35; P<.001). Patient simulator assessments also showed significant improvements as did HCPs’ self-assessments and ratings of their self-confidence when discussing different GEP tests with diverse patient types (P<.001). Conclusion: These short, intensive, interactive TARGET workshops significantly improved HCPs’ communication about GEP results in ways likely to promote more informed decision-making by patients about chemotherapy

Implications of subcutaneous or intravenous delivery of trastuzumab: further insight from patient interviews in the PrefHer study

BACKGROUND: The 2 Cohort randomised PrefHer trial examined the preferences of HER2+ve primary breast cancer patients for intravenous (IV) or subcutaneous (SC) delivery of trastuzumab via a Single Injectable Device (SID) or hand-held syringe (HHS). The novel approach and design of the study permitted an in-depth exploration of patients' experiences, the impact that different modes of delivery had on patients' well-being and implications for future management. METHODS: The preferences, experiences and general comments of patients in the PrefHer study were collected via specific semi-structured interview schedules. Exploratory analyses of data were conducted using standard methodology. The final question invited patients to make further comments, which were divided into 9 thematic categories - future delivery, compliments, time/convenience, practical considerations, pain/discomfort, study design, side-effects, psychological impact, and perceived efficacy. RESULTS: 267/467 (57%) patients made 396 additional comments, 7 were neutral, 305 positive and 86 negative. The three top categories generating the largest number of comments were compliments and gratitude about staff and being part of PrefHer (75/396; 19%), the potential future delivery of SC trastuzumab (73/396; 18%), and practical considerations about SC administration (60/396; 15%). CONCLUSIONS: Eliciting patient preferences about routes of administration of drugs via comprehensive interviews within a randomised cross-over trial yielded rich and important information. The few negative comments made demonstrated a need for proper staff training in SC administration Patients were grateful to have been part of the trial, and would have liked to continue with SC delivery. The possibility of home administration in the future also seemed acceptable. EUDRACT NUMBER: 2010-024099-25

The affect of goserelin on the QoL of women having chemotherapy for EBC: results from the OPTION trial

Background The OPTION trial results showed that premenopausal women with early stage breast cancer (EBC) receiving chemotherapy benefited from ovarian function protection with goserelin. The impact of treatments on patient reported Quality of Life (QoL) were also examined. Patients and methods 227 pre-menopausal women with EBC, were randomly assigned to chemotherapy±goserelin (C±G); 132 (58%) were ER-ve. Patients were stratified by age (≤40 years and >40 years). QoL was assessed with the Functional Assessment of Cancer Therapy – Breast, and Endocrine Symptom checklist at baseline (pre-treatment), 3, 6, 12, 18 and 24 months, then annually to 5 years. Treatment Outcome Index (TOI) score was the primary outcome. Results 213 patients were available for QoL analysis. There was a significant decrease in TOI scores for both treatment groups at 3 and 6 months that returned to pre-treatment levels at 12 months, then continued to increase reflecting improved QoL. By 3 months there was a significant difference from baseline in both groups for menopausal symptoms, and between groups in the proportion experiencing hot flushes at any time. The C + G group experienced higher levels of vasomotor symptoms generally during the treatment phase; by 24 months, the short-term negative effect of goserelin was reversed, with hot flushes twice as frequent in the chemotherapy only group (40.9% vs 21.3%). Conclusions These results show that young women diagnosed with breast cancer experienced only a short-term decrease in QoL from the addition of goserelin, in order to preserve ovarian function during chemotherapy treatment

The effect of ovarian cancer screening on sexual activity and functioning: results from the UK collaborative trial of ovarian cancer screening RCT

Background: To examine the impact of multimodal (MMS) and ultrasound (USS) screening on the sexual activity and functioning of 22,966 women in the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS) RCT. Methods: Fallowfield’s Sexual Activity Questionnaire (FSAQ) was completed prior to randomisation, then annually in a random sample (RS) of women from MMS, USS and control groups. Any women in the study who required repeat screening due to unsatisfactory results formed an Events Sample (ES); they completed questionnaires following an event and annually thereafter. Results: Over time in the RS (n=1,339) there was no difference between the MMS and USS groups in sexual activity compared with controls. In the ES there were significant differences between the USS group (n=10,156) and the MMS group (n=12,810). The USS group had lower pleasure scores (mean difference = -0.14, P=0.046). For both groups women who had ≥2 repeat screens, showed a decrease in mean pleasure scores compared to their annual scores (mean difference = -0.16, P=0.005). Similarly mean pleasure scores decreased following more intensive screens compared to annual screening (mean difference= -0.09, P=0.046). Conclusion: Ovarian cancer screening did not affect sexual activity and functioning unless a woman had abnormal results and underwent repeated or higher level screening

The preferences of 600 patients for different descriptions of randomisation

A total of 600 patients from cancer centres throughout the UK identified their most preferred and most disliked descriptions of randomisation found in current patient information sheets and websites. The CancerBACUP description, which describes both the process of randomisation and why it is done, was most preferred 151 out of 533 (28%) patients. The NCI description was viewed as overly technical and most disliked 185 out of 483 (38%) patients

Talking About Risk in the Context of GEnomic Tests (TARGET): Development and evaluation of an educational program for clinicians

Purpose: Gene expression profiling (GEP) test scores calculate risks of recurrence and likely benefit of adjuvant chemotherapy in ER positive, HER2 negative, early stage breast cancer. As health literacy and numeracy skills in the general population are poor, healthcare professionals (HCPs) require a wide repertoire of communication skills to explain clearly risk of recurrence scores (RSs) and uncertainty. We developed and evaluated an educational program for HCPs discussing GEP test results and adjuvant treatment. Methods: Eight hour workshops contained elements aimed at improving knowledge, communication skills, and self-awareness; these included:- the science underpinning GEP tests, an interactive risk psychology lecture, exercises and facilitated group discussions regarding 7 filmed scenarios involving discussions about high, intermediate and low RSs. Attendees were recorded explaining RSs with patient simulators pre and post workshop. Researchers blinded to time-point, analysed recordings using a study specific scoring system. Primary objective outcomes were improvements post workshop in HCPs’ competence and confidence when communicating 17 pre-specified key information areas. We estimated odds ratios (OR) using conditional logistic regression to compare pre and post workshop scores. Results: 65 HCPs attended. Objective analyses revealed significant positive shifts post-workshop which included explaining:- GEP tests (OR=2.98; 95% CI, 1.38 to 6.42; P=.001), recurrence RSs (OR=3.99; 95% CI, 1.72 to 9.25; P<.001), benefits of chemotherapy (OR= 3.99; 95% CI, 1.82 to 8.75; P<.001; and harms OR=2.31; 95% CI, 1.37 to 3.92; P<.001) using jargon free language (OR=5.29; 95% CI, 2.27 to 12.35; P<.001). Patient simulator assessments also showed significant improvements as did HCPs’ self-assessments and ratings of their self-confidence when discussing different GEP tests with diverse patient types (P<.001). Conclusion: These short, intensive, interactive TARGET workshops significantly improved HCPs’ communication about GEP results in ways likely to promote more informed decision-making by patients about chemotherapy