Feasibility, usability and acceptance of weekly electronic patient-reported outcomes among patients receiving pelvic CT- or online MR-guided radiotherapy - A prospective pilot study.

INTRODUCTION: The potential of patient symptoms being monitored longitudinally in radiotherapy (RT) is still unexploited. When novel technologies like online adaptive MR-guided radiotherapy (MRgRT) are evaluated, weekly electronic patient-reported outcomes (ePROs) may add knowledge about the symptom trajectory. This study aimed at evaluating feasibility, usability and acceptance of weekly ePRO among patients receiving pelvic radiotherapy. MATERIALS AND METHODS: In a mixed-methods convergent design, a prospective pilot study enrolled patients referred to pelvic radiotherapy with curative intent. Patients used their own device at home to self-report PRO weekly during and four weeks following radiotherapy and week 8, 12, and 24 (paper-questionnaire as an alternative). Feasibility was extracted from the ePRO software. The Patient Feedback Form and patient interviews were used to explore usability and patient acceptance. Patients were informed that clinicians had no access to PRO responses. RESULTS: In total, 40 patients were included; 32 patients with prostate cancer and 8 with cervical cancer (consent rate 87%), median age 68 (36-76). The majority did digital reporting (93%). 85% of patients responded to ≥80% of the weekly questionnaires with 91% average adherence to weekly completion (60% for follow-up), although lower for patients ≥age 70. Time spent on ePRO (97%) and frequency of reporting (92%) was considered appropriate. Interviews (n = 14) revealed the application was usable and the patients requested real-time feedback from the clinicians. CONCLUSION: Recruitment for ePRO during radiotherapy was feasible and adherence to weekly self-reporting high. The digital application was usable and weekly frequency and time spent acceptable. Real-time feedback from the clinicians is requested by the patients.

Nurses' involvement in end-of-life discussions with incurable cancer patients and family caregivers: An integrative review.

AIM: To review current evidence of nurses' involvement in end-of-life discussions with incurable cancer patients and their family caregivers. DESIGN: We conducted a systematic integrative review in accordance with PRISMA guidelines: PROSPERO, registration number: CRD42020186204. DATA SOURCES: CINAHL, Medline, PsycInfo, Embase. We searched for primary research between 2010 and 2020. RESULTS: Of 3,271 references, we found 15 eligible articles: qualitative (n = 12) and quantitative (n = 3). The studies focused on oncology nurses' perspective of involvement in end-of-life discussions. The data analysis resulted in four overall themes: (1) Nursing roles; the advocating, supporting, and reframing roles, and an undefined task, for example in medical consultations, (2) Trust building, (3) Nurse competences, and (4) Medical issues. SIGNIFICANCE OF RESULTS: The nurses have several roles in end-of-life discussions, but insufficient competencies to be involved in that kind of discussions, for example to involve and communicate with families. The findings implicate an educational need among the nurses. However, it also points toward an organizational change in the outpatient clinics, for example that end-of-life discussions follow a more structured approach, are offered in a scheduled manner, and that nurses invite the family caregivers to attend.

Development of patient-reported outcomes item set to evaluate acute treatment toxicity to pelvic online magnetic resonance-guided radiotherapy.

BACKGROUND: A new technology in cancer treatment, the MR-linac, provides online magnetic resonance-guided radiotherapy (MRgRT) that combines real-time visualization of the tumor and surrounding tissue with radiation therapy to deliver treatment more accurately. Online MRgRT makes it possible to minimize treatment volume, potentially reducing acute treatment toxicity. Patient-reported outcomes (PRO) add the patient perspective to evaluating treatment toxicity related to new technology. The objective of this mixed-methods study was to develop and explore the content validity of a set of PRO items to evaluate acute pelvic toxicity to radiotherapy including online MRgRT. METHODS: A literature review and chart audit were conducted to identify symptomatic adverse events (AEs) to be selected from the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) library and European Organisation for Research and Treatment of Cancer (EORTC) item library. To validate the content, the item set was applied in a prospective pilot cohort of patients referred for primary pelvic RT with curative intent. Patients reported symptoms weekly during RT (4-8 weeks) and the subsequent 4 weeks. Follow-up reports were collected at 8, 12, and 24 weeks after RT. To ensure symptom coverage clinician-reported toxicity and individual patient interviews were conducted. The symptomatic AEs were included in the final item set if ≥20% of patients reported them. RESULTS: Eighteen acute symptomatic AEs were selected for the initial item set. Forty patients (32 prostate cancer, 8 cervical cancer) were included in the pilot study. Patients with prostate cancer and those with cervical cancer both reported all 18 acute AEs. However, vomiting was not reported by > 20% of patients thus excluded from the item set. Adding a few diagnosis-specific AEs to the final item set was required for both prostate and cervical cancer patients. CONCLUSIONS: A PRO item set for patients with pelvic cancer treated with radiotherapy with a curative intent was developed and content validity explored. In the pilot study, the item set captured the most common acute symptomatic AEs for patients with prostate and cervical cancer related to pelvic RT including online MRgRT. Further validation of the content in broader disease sites would be needed in future studies.

Acknowledging cancer as a family disease: A systematic review of family care in the cancer setting.

PURPOSE: Family members are a part of the team to improve the outcomes of the person with cancer. Families require support and information to optimise their care, however, their needs are often unacknowledged and within clinical areas there is a lack of family focused interventions. Studies highlight families' needs but lack a family representation. The aim was to explore research with family as the unit-of-care during cancer treatment. METHOD: The Pickering systematic quantitative literature review method; a 15-step process from searching, database development and analysis was followed. Research published 2008-2019 within databases: MEDLINE, SCOPUS, PsycINFO, Cochrane, CINAHL; key words, 'family* or caregiver*, and cancer*, neoplasm* and coping*, distress* in November 2019. Quality assessment completed using Mixed Methods Appraisal Tool, descriptive quantitative analysis and thematic analysis. RESULTS: Studies involving patients and family members were included in the review (N = 73). The analysis identified participants had a mean age of 58 years and primarily lung, breast or prostate cancer. Over 80% were from America and European countries; 93% had a dyad sample, quantitative studies (76%). There was eight intervention studies between four to sixteen weeks long, focused on family wellbeing. Themes described the impact of cancer on the whole family, the importance of communication between family members, and resources for family members. CONCLUSION: The review identified four main scales and optimum intervention styles. Family research in the adult cancer needs to focus on intervention studies, increase international focus and inclusion of other family members such as children, friends and older adults.

Strengths and resources used by Australian and Danish adult patients and their family caregivers during treatment for cancer.

PURPOSE: Family plays an essential role in supporting the patient with cancer, however, relatively little attention has been given to understanding the strengths and resources of the family unit across different settings and countries. This study aims to investigate the strengths and resources of patients and family members in Australia and Denmark. METHODS: Using a descriptive, cross-sectional design, 232 patient and family participants from inpatient and outpatient oncology services in Australia and Denmark completed paper based surveys that included the Family Hardiness Index (FHI) and Family Crisis Orientated Personal Evaluation Scales (F-COPES), together with demographic and health information. RESULTS: The family's appraisal of the cancer and ways the family worked together predicted the level of external resources used to manage their circumstances. CONCLUSION: After a cancer diagnosis patients and family respond in different ways related to their family functioning. There is a need for nurses to work closely with the family to understand their strengths and resources, and tailor support and information for family to promote optimal patient outcomes.

The effects of multidisciplinary rehabilitation: RePCa-a randomised study among primary prostate cancer patients.

BACKGROUND: The objective of this study is the effectiveness of multidisciplinary rehabilitation on treatment-related adverse effects after completed radiotherapy in patients with prostate cancer (PCa). METHODS: In a single-centre oncology unit in Odense, Denmark, 161 PCa patients treated with radiotherapy and androgen deprivation therapy were randomly assigned to either a programme of two nursing counselling sessions and two instructive sessions with a physical therapist (n=79) or to usual care (n=82). Primary outcome was Expanded Prostate Cancer Index Composite (EPIC-26) urinary irritative sum-score. Before radiotherapy, pre-intervention 4 weeks after radiotherapy, and after a 20-week intervention, measurements included self-reported disease-specific quality of life (QoL; EPIC-26, including urinary, bowel, sexual, and hormonal symptoms), general QoL (Short-form-12, SF-12), pelvic floor muscle strength (Modified Oxford Scale), and pelvic floor electromyography. Intension-to-treat analyses were made with adjusted linear regression. RESULTS: The intervention improved, as compared with controls, urinary irritative sum-score 5.8 point (Cohen's d=0.40; P=0.011), urinary sum-score (d=0.34; P=0.023), hormonal sum-score (d=0.19; P=0.018), and the SF-12 Physical Component Summary, d=0.35; P=0.002. Patients with more severe impairment gained most. Pelvic floor muscle strength measured by electromyography declined in both groups, P=0.0001. CONCLUSION: Multidisciplinary rehabilitation in irradiated PCa patients improved urinary and hormonal symptoms, and SF-12 physical QoL.

Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.

This study explores prostate cancer patients' experiences of rehabilitation after radiotherapy with androgen deprivation therapy (ADT). Patients who had completed a multidisciplinary rehabilitation programme with psychosocial support and physiotherapy were interviewed in two focus groups: Group 1 consisted of six men who came to the rehabilitation with their spouses, and Group 2 of seven men who came alone. Meaning condensation was used to analyse the interviews. Radiotherapy was described as full-time work. Adverse effects due to ADT influencing masculinity and identity were emphasised. The men embraced life with a particular sense of humour. Whether rehabilitation was experienced as useful depended on the health professionals' approach, and on the patients' motivation and effort to contribute to health promotion, and to convert experiences into coping strategies. The supportive role of the spouse was emphasised by several, but some men preferred to handle the process alone. In conclusion, men undergoing ADT should be carefully informed of the consequences. Spousal involvement in rehabilitation must be decided by the patient. The focus group interviews themselves had a positive impact on the men's understanding of their rehabilitation processes. The specific male approach and differences between the needs of female and male cancer patients are important to understand when planning rehabilitation.