BackgroundMultiple myeloma is a haematological malignancy characterized by significant morbidity and mortality. This study sought to develop an in-depth understanding of patients’ lived experiences of relapsed or refractory multiple myeloma (RRMM) and its treatment, and to identify which features of treatment were most important to them.MethodsQualitative interviews and focus groups (FGs) were conducted with 32 people living with RRMM across Canada. In Phase 1, interviews focused on participants’ accounts of their experiences with the disease and its treatment and laid the groundwork for the FGs (Phase 2). The FGs developed a deeper understanding of patients’ treatment priorities. Interview and FG transcripts were coded for emergent themes and patterns.ResultsThe interviews identified important side effects that had significant impacts on patients’ lives, including physical, cognitive, and psychological/emotional side effects. Participants also identified specific treatment features (attributes) that were important to them. These were compiled into a list and used in the FGs to understand patients’ priorities. Higher prioritized attributes were: life expectancy, physical and cognitive side effects, and financial impact. Mode of administration, treatment intervals, psychological side effects, and sleep/mood effects were identified as lower priorities.ConclusionsRRMM and its treatments impact importantly on patients’ quality-of-life across a range of domains. Patients prioritized treatment features that could enhance life expectancy, minimize side effects and offset financial burdens.Implications for cancer survivorsA clear articulation of patient priorities can contribute to efforts to design treatment with patients’ concerns in mind, thereby promoting a more patient-centered approach to care.

Background: Minimal qualitative data exist on the experiences of cancer patients treated with immune checkpoint inhibitors or costimulatory antibodies.Understanding the day to day experiences of patients being treated with immune checkpoint modulators, and how these relate to their health-related quality of life, can inform future research and lead to better clinical decision-making and care. We report here the first in depth qualitative study to consider patients' diverse and complex experiences with immune checkpoint modulators, with a focus on side effects and how these impact daily life. Methods: This single-center qualitative study was based on focus groups and semistructured interviews. Patients who were being treated or who had been treated with immune checkpoint modulators within the last year for a range of cancer diagnoses were recruited. Interpretive description informed our inductive, iterative approach to analysis. Results: Eight themes were identified, characterizing the complexity of these patients' lived experiences: major categories of side effects experienced and how they impacted patient well-being; the heterogeneous nature of side effects experienced; living with uncertainty; reframing the meaning and severity of SEs; focus on survival, hope, and being positive; acceptance and adaptation; feeling supported; and faith in medical innovation. Throughout their accounts, participants highlighted the profound impact that immune checkpoint modulators had on their daily lives. Conclusion: This is the first in-depth qualitative study into patient accounts of their experiences of treatment with immune checkpoint modulators, related side effects, and how it impacted their daily lives. This research is an integral initial step in developing an instrument that will assess treatment-related side effects in patients treated with this form of therapy. |ALA-LEPPILAMPI Et AL. K E Y W O R D Scostimulatory antibodies, Health-related quality of life, immune checkpoint inhibitors, immunotherapy, patient experiences

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Background Patients with cancer who are treated with immune checkpoint modulators (ICMs) have their health‐related quality of life (HRQOL) measured using general patient‐reported outcome (PRO) tools. To the authors' knowledge, no instrument has been developed to date specifically for patients treated with ICMs. The objective of the current study was to develop a toxicity subscale PRO instrument for patients treated with ICMs to assess HRQOL. Methods Input was collected from a systematic review as well as patients and physicians experienced with ICM treatment. Descriptive thematic analysis was used to evaluate the qualitative data obtained from patient focus groups and interviews, which informed an initial list of items that described ICM side effects and their impact on HRQOL. These inputs informed item generation and/or reduction to develop a toxicity subscale. Results Focus groups and individual interviews with 37 ICM‐treated patients generated an initial list of 176 items. After a first round of item reduction that produced a shortened list of 76 items, 16 physicians who care for patients who are treated with ICMs were surveyed with a list of 49 patient‐reported side effects and 11 physicians participated in follow‐up interviews. A second round of item reduction was informed by the physician responses to produce a list of 25 items. Conclusions To the authors' knowledge, this 25‐item list is the first HRQOL‐focused toxicity subscale for patients treated with ICMs and was developed in accordance with US Food and Drug Administration guidelines, which prioritize patient input in developing PRO tools. The subscale will be combined with the Functional Assessment of Cancer Therapy–General (FACT‐G) to form the FACT‐ICM. Prior to recommending the formal use of this PRO instrument, the authors will evaluate its validity and reliability in longitudinal studies involving substantially more patients.

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This paper discusses research that is being conducted using visual representations as a method for understanding students' experiences of the assessment process in art and design. The preliminary analysis of drawings has highlighted a number of factors including: a negative reaction to assessment; the use of metaphor and simile in drawings and the effectiveness of using visual representations to successfully convey experience.Using visual representations is proposed as a means of furthering our understanding of the student learning experience; and as a method for students to reflect on their experiences, such as within a Personal Development Planning (PDP) process. The drawings have highlighted an overwhelmingly negative reaction to assessment and this paper suggests that the prejudicial effects of assessment need further investigation, due to potentially detrimental consequences on students' creative abilities.

Abstract. BACKGROUND:Immigrant workers who are new to Canada are considered a vulnerable population under the Ontario Ministry of Labour Prevention Strategy for workplace safety. Posters outlining workplace safety rights and responsibilities may not be understandable to new immigrants. OBJECTIVE: To explore visual approaches to making health and safety messages more understandable to new immigrants. METHODS: This pilot study used arts-based qualitative research methods. Key messages from the Ministry of Labour Health & Safety at Work poster were (re)represented as images by an artist. Recent immigrants engaged in individual interviews and then took part in a focus group, in order to elicit their experiences of health and safety practices, their understanding and feedback concerning the Ministry poster, and the images created. RESULTS: An image-rich version of the poster was developed. The combination of drawings and minimal text was preferred and considered helpful by participants. Barriers to health and safety and work challenges for new immigrants were highlighted. Visual analysis yielded new versions of the poster, as well as a pictorial representation of the research process and study findings. CONCLUSIONS:The study demonstrates the value of using image-rich posters with immigrant workers, and the effectiveness of using arts-based methods within the research process.

The internet offers considerable potential for open and distance learning in psychology. Research reveals an abundance of psychology demonstrations and experiments available online, directed both at students and potential research participants. Although expertise is being developed to overcome the technical problems associated with this medium, there has been little or no evaluation into the impact of participating in such studies on the learning experience of distance education students. This paper describes an attempt to remedy the situation. An experiment including two computer tasks and questionnaires was offered online to a group of distance education students. A follow up study was used to assess the implications of internet experiments on the learning experience of distance education students.