For the benefit of others: reasons why women with breast cancer participate in RCTs

Introduction: Appreciation of the barriers and drivers affecting enrolment in randomised clinical trials (RCTs) is important for future trial design, communication and information provision. Method: As part of an intervention to facilitate UK multidisciplinary team communication about RCTs, women with breast cancer who discussed trials with doctors and/or research nurses completed questionnaires examining: - clarity of trial information and reasons for either accepting or declining trial entry. Results: 152 women with breast cancer completed the questionnaires; 113/152 (74%) consented to RCT enrolment. Patients’ satisfaction with communication about the trial information was very good, irrespective of participation decisions. Acceptors’ and decliners’ responses to 9/16 statements concerning decisions about trial participation differed significantly. ‘Wanting to help with doctor’s research’ influenced 100% acceptors compared to 57% of decliners (p<.001). Decliners were more likely to be ‘worried about randomisation’ (20% v 39%; p<.035) and to ‘want doctor to choose treatment rather than be randomised’ (31% v 53%; p<.031). Primary reason for trial acceptance was altruism; “I feel that others with my illness will benefit from the results of the trial”, 58/108 (54%). Conclusion: A majority of women accepted RCT entry citing altruistic motivations as the primary driver for participation. Trial design and setting (metastatic or adjuvant) had little impact on participation

Insights into the use of social comparisons within an advanced cancer setting

Background The PROACT (Patient Reported Outcomes in cancer, impact of Age and Carer role demands associated with Treatment) study had the primary aim of developing two scales measuring the impact of cancer on wellbeing and caregiving responsibilities, for people with cancer and the individuals supporting them. The project consisted of four consecutive studies; the first stage was the collection of qualitative narratives to understand the patient/caregiver experience. This paper reports on an incidental finding from these narratives. Methods The researchers conducted semi-structured interviews exploring participants’ views on the impact cancer had on their quality of life. They interviewed 24 people with stage III/IV cancer from three tumor groups, Lung (n=6), Melanoma (n=9) and Ovarian (n=9), and 23 informal caregivers. Interviews were recorded and transcribed verbatim and a framework was developed through open coding. A framework approach to thematic analysis was employed. Results Twenty themes and 33 sub-themes were identified including topics such as impact for caregiving and employment. There was an unplanned finding of participants recurrently using concepts of ‘luck’ or good fortune when describing their situations. While not a theme itself this narrative was present across the framework, occurring when individuals made comparisons to ‘other’ groups of people perceived as facing more difficulties. Conclusions This analysis provides insight into the use of language by both patients and informal caregivers in the advanced disease setting, laying the foundation for future research exploring any effects this has on dyadic wellbeing. These interpretations form a basis to explore whether this language can be harnessed by healthcare professionals to deliver information in line with an individual’s conceptualization of their situation

Meeting the Needs of Refugees in Utah Through Interior Design

This thesis will discuss a collaborative project between the senior students in the Landscape Architecture and Environmental Planning (LAEP) department and the Interior Design (ID) Program. In an effort to understand and address the needs of the refugees who reside in South Salt Lake we will research, go on site visits, speak with refugee families, and meet with the outreach coordinator for the refugee community of South Salt Lake. All needs, whether observed or mentioned specifically, will be taken into account and addressed within the parameters of the project. LAEP students will create an urban plan for the redevelopment of nine blocks from 300 West to South Main Street and 2100 South to West Truman Ave in South Salt Lake. ID students will design buildings and interiors to meet the needs of refugees and support community infrastructure. The goal of this project is to encourage community building through developing the infrastructure in this area. The parameters for this project involve the redesign of a nine block area and to design the three spaces specified by the outreach coordinator and specialist for the refugee community in South Salt Lake. The spaces include an apartment complex, marketplace, and transit center

The pervasive nature of uncertainty – a qualitative study with patients with advanced cancer and their informal caregivers

Purpose: To explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers. Methods: In-depth qualitative interviews, transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. Results: 24 patient-caregiver dyads with advanced ovarian (9) melanoma (9) or lung cancer (6). Patients were aged 39-84 (median 62 years), caregivers 19-85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other. Conclusions: Both patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other. Implications for survivors: Uncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward however patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and 3 health care professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues

Intravenous versus subcutaneous drug administration. Which do patients prefer? A systematic review

BACKGROUND: Intravenous (IV) drug delivery is commonly used for its rapid administration and immediate drug effect. Most studies compare IV to subcutaneous (SC) delivery in terms of safety and efficacy, but little is known about what patients prefer. METHODS: A systematic review was conducted by searching seven electronic databases for articles published up to February 2014. Included studies were randomized controlled trials (RCTs) and/or crossover designs investigating patient preference for SC versus IV administration. The risk of bias in the RCTs was determined using the Cochrane Collaboration tool. Reviewers independently extracted data and assessed the risk of bias. Any discrepancies were resolved by consensus. RESULTS: The search identified 115 publications, but few (6/115) met the inclusion criteria. Patient populations and drugs investigated were diverse. Four of six studies demonstrated a clear patient preference for SC administration. Main factors associated with SC preference were time saving and the ability to have treatment at home. Only three studies used study-specific instruments to measure preference. CONCLUSIONS: Results suggest that patients prefer SC over IV delivery. Patient preference has clearly been neglected in clinical research, but it is important in medical decision making when choosing treatment methods as it has implications for adherence and quality of life. If the safety and efficacy of both administration routes are equivalent, then the most important factor should be patient preference as this will ensure optimal treatment adherence and ultimately improve patient experience or satisfaction. Future drug efficacy and safety studies should include contemporaneous, actual patient preference where possible, utilizing appropriate measures

Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing

Purpose As demand for genetic testing grows and a wide range of health care professionals (HCPs) are potentially involved in discussions about testing and delivering results, we developed an educational package to help HCPs with these conversations. Methods To inform the content of training materials, we conducted interviews with 11 women four of whom had BRCA1 and seven with BRCA2 mutations. Five women had or were currently receiving breast cancer treatment. Ages ranged from 38 to 77 years. Interviews were audio-recorded, transcribed verbatim and analysed using the Framework approach to thematic analysis. Results We identified 18 themes and 12 subthemes across the interviews, encompassed by six overarching themes: risk, decision-making, information and understanding, communication and improvement, accessing the system: process and frustration, emotional and social drivers. Conclusions The findings informed the didactic components of an educational communication workshop and a summary document for attendees. Qualitative interviews provide an important way of incorporating the patient perspective into communication training materials for HCPs by highlighting key issues that matter most to the patient

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

Purpose The Caregiver Roles and Responsibilities Scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation. Methods The CRRS was developed from the thematic analysis of two interview studies with cancer patients (stage III-IV breast, gynaecological, lung or melanoma) and caregivers. In the evaluation studies, participants completed the CRRS alongside the Caregiver Quality of Life - Cancer, the main criterion measure for concurrent validity, and the WHOQOL-BREF for additional convergent validity data. Questionnaires were completed at baseline, 7-days and 2-months. Demographic data and patient characteristics were collected at baseline. Results Two-hundred and forty-five caregivers to people with stage I-IV breast, colorectal, gynaecological, head and neck, lung or renal cancer or melanoma completed the CRRS at least once. The final 41 core items selected comprised five subscales: Support and Impact, Lifestyle, Emotional Health and Wellbeing, Self-care and Financial Wellbeing as well as three standalone items. Missing data rate was low (0.6%); there were no ceiling or floor effects for total scores. Cronbach’s alpha was 0.92 for the CRRS-41; 0.75-0.87 for the subscales. CRRS showed good test-retest reliability (ICC=0.91), sensitivity to change and the predicted pattern of correlation with validation measures r=0.75-0.89. The standalone 7-item jobs and careers subscale requires further validation. Conclusions Initial evaluation shows the CRRS has good validity and reliability and is a promising tool for the assessment of the effects of cancer and cancer treatment on the lives and wellbeing of informal caregivers

Development and validation of the patient roles and responsibilities scale in cancer patients

Purpose The Patient Roles and Responsibilities Scale (PRRS) was developed to enable a broader evaluation of the impact of cancer and cancer treatment, measuring ‘real world’ roles and responsibilities such as caring for others and financial and employment responsibilities. Here we report the development and initial validation. Methods The 29-item PRRS was developed from the thematic analysis of two interview studies with cancer patients and caregivers. In the evaluation study, participants completed the PRRS alongside the Social Difficulties Inventory (SDI), the main criterion measure for concurrent validity, and the Functional Assessment of Cancer Therapy – General (FACT-G) and WHO Quality Of Life-BREF (WHOQOL-BREF) for additional convergent validity data. Questionnaires were completed at baseline, 7-days (PRRS only) and 2-months. Demographic data and patient characteristics were collected at baseline. Results One hundred and thirty-five patients with stage III/IV breast, lung or gynaecological cancer or melanoma completed the PRRS at least once. Five items performed poorly and were removed from the scale. The final 16 core items selected comprised 3 dimensions: Family Wellbeing, Responsibilities and Social Life, and Financial Wellbeing, identified in principal component analysis, accounting for 61.5% of total variance. Missing data (0.6%) and floor/ceiling effects were low (0%/1.5%). Cronbach’s alpha was 0.9 for the PRRS-16; 0.79-0.87 for the subscales. PRRS showed good test-retest reliability (ICC-0.86), sensitivity to change and the predicted pattern of correlation with validation measures r=ǀ0.65-0.77ǀ. The standalone 7-item jobs and careers subscale requires further validation. Conclusions Initial evaluation shows the PRRS is psychometrically robust with potential to inform the evaluation of new treatments in clinical trials and real world studies

Understanding of prognosis in non-metastatic prostate cancer: a randomised comparative study of clinician estimates measured against the PREDICT prostate prognostic model

Abstract: PREDICT Prostate is an individualised prognostic model that provides long-term survival estimates for men diagnosed with non-metastatic prostate cancer (www.prostate.predict.nhs.uk). In this study clinician estimates of survival were compared against model predictions and its potential value as a clinical tool was assessed. Prostate cancer (PCa) specialists were invited to participate in the study. 190 clinicians (63% urologists, 17% oncologists, 20% other) were randomised into two groups and shown 12 clinical vignettes through an online portal. Each group viewed opposing vignettes with clinical information alone, or alongside PREDICT Prostate estimates. 15-year clinician survival estimates were compared against model predictions and reported treatment recommendations with and without seeing PREDICT estimates were compared. 155 respondents (81.6%) reported counselling new PCa patients at least weekly. Clinician estimates of PCa-specific mortality exceeded PREDICT estimates in 10/12 vignettes. Their estimates for treatment survival benefit at 15 years were over-optimistic in every vignette, with mean clinician estimates more than 5-fold higher than PREDICT Prostate estimates. Concomitantly seeing PREDICT Prostate estimates led to significantly lower reported likelihoods of recommending radical treatment in 7/12 (58%) vignettes, particularly in older patients. These data suggest clinicians overestimate cancer-related mortality and radical treatment benefit. Using an individualised prognostic tool may help reduce overtreatment

Blurring of boundaries in the doctor-patient relationship

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