Carolyn Morris

Asking the right questions to get the right answers: using cognitive interviews to review the acceptability, comprehension and clinical meaningfulness of patient self-report adverse event items in oncology patients.

Abstract Background: Standardized reporting of treatment-related adverse events (AE) is essential in clinical trials, usually achieved by using the National Cancer Institute (NCI) Common Terminology Criteria for Adverse Events (CTCAE) reported by clinicians. Patient-reported adverse events (PRAE) may add value to clinician assessments, providing patient perspective on subjective toxicity. We developed an online patient symptom report and self-management system for real-time reporting and managing AE during cancer treatment integrated with electronic patient records (eRAPID). As part of this program we developed a patient version of the CTCAE (version 4.0), rephrasing terminology into a self-report format. We explored patient understanding of these items via cognitive interviews. Material and method: Sixty patients (33 female, 27 male) undergoing treatment were purposively sampled by age, gender and tumor group (median age 61.5, range 35–84, 12 breast, 12 gynecological, 13 colorectal, 12 lung and 11 renal). Twenty-one PRAE items were completed on a touch-screen computer. Subsequent audio-recorded cognitive interviews and thematic analysis explored patients’ comprehension of items via verbal probing techniques during three interview rounds (n = 20 patients/round). Results: In total 33 item amendments were made; 29% related to question comprehension, 68% response option and 3% order effects. These amendments to phrasing and language improved patient understanding but maintained CTCAE grading and key medical information. Changes were endorsed by members of a patient advisory group (N = 11). Conclusion: Item adaptations resulted in a bank of consistently interpreted self-report AE items for use in future research program. In-depth analysis of items through cognitive interviews is an important step towards developing an internationally valid system for PRAE, thus improving patient safety and experiences during cancer treatment.

Adjuvant endocrine therapy after breast cancer: a qualitative study of factors associated with adherence.

Introduction Despite evidence of the efficacy of adjuvant endocrine therapy (AET) in reducing the risk of recurrence and mortality after treatment for primary breast cancer, adherence to AET is suboptimal. This study aimed to explore factors that influence adherence and nonadherence to AET following breast cancer to inform the development of supportive interventions. Methods Interviews were conducted with 32 women who had been prescribed AET, 2–4 years following their diagnosis of breast cancer. Both adherers (n=19) and nonadherers (n=13) were recruited. The analysis was conducted using the Framework approach. Results Factors associated with adherence were as follows: managing side effects including information and advice on side effects and taking control of side effects, supportive relationships, and personal influences. Factors associated with nonadherence were as follows: burden of side effects, feeling unsupported, concerns about long-term AET use, regaining normality, including valuing the quality of life over length of life, and risk perception. Conclusion Provision of timely information to prepare women for the potential side effects of AET and education on medication management strategies are needed, including provision of timely and accurate information on the efficacy of AET in reducing breast cancer recurrence and on potential side effects and ways to manage these should they arise. Trust in the doctor–patient relationship and clear patient pathways for bothersome side effects and concerns with AET are important. Training and education on AET for GPs should be considered alongside novel care pathways such as primary care nurse cancer care review and community pharmacist follow-up.

Psychometric properties of the Beliefs about Medicine Questionnaire–adjuvant endocrine therapy (BMQ-AET) for women taking AETs following early-stage breast cancer:

This study evaluated the Beliefs about Medicine Questionnaire to explore adherence to adjuvant endocrine therapy after treatment for breast cancer (BMQ-AET). Factor structure of the BMQ-AET was explored alongside internal consistency, convergent validity and acceptability. The BMQ-AET Specific Scale fitted the original 10 item model. Internal consistency of the BMQ-AET was much improved compared to the original BMQ and convergent validity showed predicted direction of correlation, although correlation with BMQ-AET concerns scale was low. Acceptability was good. The evaluation of the BMQ-AET is encouraging, and could facilitate future research around adherence to AET.

Exploring adherence to adjuvant endocrine therapy (AET) following treatment for breast cancer

Background: It has been reported that a quarter of people diagnosed with cancer lack social support. Online cancer communities could provide this form of support. Sixty-one per cent of adults in the UK access social media every day and online cancer communities are rising in popularity. However, there is limited evidence about how people use online cancer communities, and how they may, or may not, support people affected by cancer. Aims: This study aims to explore experiences of people affected by cancer visiting online cancer communities. Methods: A qualitative study was conducted using a constructivist grounded theory approach. Data were generated through semi-structured interviews with people who had visited online cancer communities, including people diagnosed with cancer and their family members. Results: A core category was developed and labelled ‘navigating cancer using online communities’. Participants used support in communities to navigate challenges they faced with cancer. This produced three categories of experience in online communities. Firstly, the advice of community members set participants on a ‘journey to become informed’. Secondly, participants were cast into a ‘journey to recreate identity’ as they connected and formed friendships online. Thirdly, participants navigated a ‘journey through different online worlds’ to the most relevant and often hidden communities. Conclusions: Social support is prevalent in online communities, multifaceted and mobilises active self-management in cancer care. This theoretical framework can inform the development of existing online communities to suit the needs of people affected by cancer. Further research should consider online communities in interventions for cancer self-management.