Quality of life support in advanced cancer – Web and technological interventions: systematic review and narrative synthesis

Background As treatments continue to progress, patients with advanced cancer are living longer. However, ongoing physical side-effects and psychosocial concerns can compromise quality of life (QoL). Patients and physicians increasingly look to the internet and other technologies to address diverse supportive needs encountered across this evolving cancer trajectory. Objectives 1. To examine the features and delivery of web and technological interventions supporting patients with advanced cancer. 2. To explore their efficacy relating to QoL and psychosocial well-being. Methods Relevant studies were identified through electronic database searches (MEDLINE, PsychINFO, Embase, CINAHL, CENTRAL, Web of Science and ProQuest) and handsearching. Findings were collated and explored through narrative synthesis. Results Of 5274 identified records, 37 articles were included. Interventions were evaluated within studies targeting advanced cancer (13) or encompassing all stages (24). Five subtypes emerged: Interactive Health Communication Applications (n=12), virtual programmes of support (n=11), symptom monitoring tools (n=8), communication conduits (n=3) and information websites (n=3). Modes of delivery ranged from self-management to clinically integrated. Support largely targeted psychosocial well-being, alongside symptom management and healthy living. Most studies (78%) evidenced varying degrees of efficacy through QoL and psychosocial measures. Intervention complexity made it challenging to distinguish the most effective components. Incomplete reporting limited risk of bias assessment. Conclusion While complex and varied in their content, features and delivery, most interventions led to improvements in QoL or psychosocial well-being across the cancer trajectory. Ongoing development and evaluation of such innovations should specifically target patients requiring longer-term support for later-stage cancer

How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis

Background: In this paper, we report the findings of a realist synthesis that aimed to understand how and in what circumstances patient reported outcome measures (PROMs) support patient-clinician communication and subsequent care processes and outcomes in clinical care. We tested two overarching programme theories: (1) PROMs completion prompts a process of self-reflection and supports patients to raise issues with clinicians and (2) PROMs scores raise clinicians’ awareness of patients’ problems and prompts discussion and action. We examined how the structure of the PROM and care context shaped the ways in which PROMs support clinician-patient communication and subsequent care processes. Results: PROMs completion prompts patients to reflect on their health and gives them permission to raise issues with clinicians. However, clinicians found standardised PROMs completion during patient assessments sometimes constrained rather than supported communication. In response, clinicians adapted their use of PROMs to render them compatible with the ongoing management of patient relationships. Individualised PROMs supported dialogue by enabling the patient to tell their story. In oncology, PROMs completion outside of the consultation enabled clinicians to identify problematic symptoms when the PROM acted as a substitute rather than addition to the clinical encounter and when the PROM focused on symptoms and side effects, rather than health related quality of life (HRQoL). Patients did not always feel it was appropriate to discuss emotional, functional or HRQoL issues with doctors and doctors did not perceive this was within their remit. Conclusions: This paper makes two important contributions to the literature. First, our findings show that PROMs completion is not a neutral act of information retrieval but can change how patients think about their condition. Second, our findings reveal that the ways in which clinicians use PROMs is shaped by their relationships with patients and professional roles and boundaries. Future research should examine how PROMs completion and feedback shapes and is influenced by the process of building relationships with patients, rather than just their impact on information exchange and decision making

Comparison of EORTC QLQ-C30 and PRO-CTCAE™ questionnaires on six symptom items

Context: Clinical studies have over the past decade paid increasing attention to health-related quality of life data. Multiple questionnaires are often administered resulting in overlapping questions increasing patient burden. Objectives: To examine the correlations between the commonly used European Organization for Research and Treatment of Cancer Quality of Life Questionnnaire-C30 (QLQ-C30) and the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE™) on six coinciding items to determine consistency between overlapping items. Methods: Data were prospectively collected from patients attending two cancer centers in the U.K. Participants completed the QLQ-C30 version 3.0 every four weeks and the PRO-CTCAE at least once a week for 12 weeks. Data were collected via the Internet or an interactive voice response. For the six coinciding items in QLQ-C30 and PRO-CTCAE: pain, nausea, vomiting, constipation, diarrhea, and fatigue, comparisons were made between all possible related responses by aligning the four responses in the QLQ-C30 with two condensed versions of the five responses in the PRO-CTCAE. Consistency and reliability was determined with the intraclass correlation coefficient (ICC) and Cronbach's α. Results: About 247 patients completed 785 QLQ-C30 and 2501 PRO-CTCAE questionnaires. Moderate (ICC >0.5) to good (ICC >0.75) reliability and Cronbach's α >0.7 were found on all coinciding questions except for questions concerning the severity of nausea and vomiting as a result of relatively few patients responding to these questions. Items on frequency showed better correlations than the severity and interference items. Conclusion: The good reliability and consistency between the QLQ-C30 and PRO-CTCAE support future attempts to minimize patient burden by shortening health-related quality of life questionnaires

Online symptom monitoring during pelvic radiotherapy: randomised pilot trial of eRAPID intervention

Background Radiotherapy and chemo-radiotherapy for pelvic cancers increase survival but are associated with serious treatment-related symptoms. Electronic-patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID) is a secure online system for patients to self-report symptoms, generating immediate advice for hospital contact or self-management. This pilot study aimed to establish feasibility and acceptability of the system. Methods In a prospective two-centre randomised parallel-group pilot study. Patients undergoing radical pelvic radiotherapy for prostate cancer (prostateRT) or chemo-radiotherapy for lower gastrointestinal and gynaecological cancers (chemoRT) were randomised to usual care (UC) or eRAPID (weekly online symptom reporting for 12, 18 & 24 weeks). Primary outcomes were recruitment/attrition, study completion and patient adherence. Secondary outcomes were impact on hospital services and performance of patient outcome measures. Missing data, floor/ceiling effects, and mean change scores were examined for FACT-G, EORTC-QLQ-C30, self-efficacy, EQ5D-5L. Results From 228 patients approached, 167 (73.2%) were consented and randomised (83-eRAPID,84-UC;87-prostateRT;80-chemoRT). 150/167 completed 24 study weeks. Only 16 patients (9.6%) withdrew (10-eRAPID; 6-UC). In the eRAPID arm, completion rates were higher in patients treated with prostateRT compared to chemoRT: week 1 93% vs 69%; week 2 93% vs 68%; week 12 69% vs 55%). Overall over 50% of online reports triggered self-management advice for milder AEs. Unscheduled hospital contact was low, with no difference between eRAPID and UC. Return rates for outcome measures were excellent in prostateRT (97%-91%; 6-24 weeks) but lower in chemoRT (95%-55%; 6-24 weeks). Missing data was low (1%-4.1%), ceiling effects were evident in EQ5D-5L, self-efficacy-scale and FACT-PWB. At 6-weeks the chemoRT-eRAPID group showed less deterioration in FACT-G, EORTC QLQ-C30 and EQ5D-VAS than UC, after baseline adjustment. Conclusions eRAPID was successfully added to UC at two cancer centres in different patient populations. Acceptability and feasibility was confirmed with excellent adherence by prostate patients, but lower by those undergoing chemoRT for gynaecological cancers