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Introduction: Emotional support provided by health care professionals (HCPs) for people diagnosed with cancer is associated with improved outcomes. Support via social networks may also be important. Aims: To report among a sample of distressed patients and caregivers, (1) the importance attributed to different sources of emotional support (HCPs and social networks) by distressed cancer patients and caregivers; (2) the proportion who indicate they did not receive sufficient levels of emotional support; and (3) potential associations between respondents' demographic and clinical characteristics and reported lack of emotional support. Methods: This study utilised cross‐sectional data from telephone interviews collected during the usual‐care phase of the Structured Triage and Referral by Telephone (START) trial. Participants completed a telephone interview 6 months after their initial call to the Cancer Council Information and Support service and included recall of importance and sufficiency of emotional support. Results: More than two‐thirds of patients (n = 234) and caregivers (n = 152) reported that family and friends were very important sources of emotional support. Nurses (69% and 42%) and doctors (68% and 47%) were reported very important, while a lower proportion reported that psychologists and psychiatrists were very important (39%, and 43%). Insufficient levels of support were reported by 36% of participants. Perceptions of insufficient support were significantly associated with distress levels (p <.0001) and not having a partner (p =.0115). Conclusion: Social networks, particularly family, are an important source of emotional support. Higher levels of distress, those without partners, and caregivers may require targeted interventions to increase their access to emotional support. Emotional support provided by health care professionals (HCPs) and social networks for distressed patients and caregivers affected by cancer may supplement formalised psychological support. People with higher levels of distress, those without partners, and caregivers may require targeted interventions to increase their access to emotional support. [ABSTRACT FROM AUTHOR]

Background: Patient reported outcomes measures (PROMs) can provide valuable metrics in clinical trials and cancer registries. To ensure relevance, patient participation must be optimized and PROMs be highly acceptable to patients. There are few data reporting methods to maximize recruitment and a lack of consensus regarding appropriate PROMs for thyroid cancer survivors. Methods: All patients with a new diagnosis of thyroid (excluding micropapillary and anaplastic) cancer within a single Australian health district between January 2020 and December 2021 were invited to complete PROMs electronically, and self‐report ease of use and comprehensiveness of each tool. Participants completed Short Form‐12 (SF‐12), European Organization of Research and Treatment of Cancer (EORTC‐QLQ‐C30), City of Hope Quality of Life‐Thyroid Version (COH‐TV) and Thyroid Cancer Quality of Life Survey (ThyCaQoL). Semi‐structured qualitative telephone interviews explored patient priorities. An enhanced, multimodal recruitment strategy was instituted after 12 months due to low response rates. Results: Survey completion improved under enhanced recruitment (37/62, 60% versus 19/64, 30%, P = 0.0007) with no differences in demographic or clinical characteristics. Few (4%–7%) respondents rated surveys as difficult to complete. No single PROM comprehensively captured health‐related quality of life, with disease‐specific tools performing marginally better (54% ThyCaQoL and 52% CoH‐TV) compared to generic tools (38% SF‐12 and 42% EOROTC‐QLQ‐C30). Qualitative data suggested that concurrent diagnoses, and survey invitation prior to surgery, made surveys more difficult to complete. Conclusion: A comprehensive and representative assessment of PROMs in thyroid cancer survivors requires the use of multiple survey tools and specialized staff to maximize recruitment. [ABSTRACT FROM AUTHOR]

Routine cognitive assessment for adults with brain cancers is seldom completed but vital for guiding daily living, maintaining quality of life, or supporting patients and families. This study aims to identify cognitive assessments which are pragmatic and acceptable for use in clinical settings. MEDLINE, EMBASE, PsycINFO, CINAHL, and Cochrane were searched to identify studies published in English between 1990 and 2021. Publications were independently screened by two coders and included if they: (1) were peer-reviewed; (2) reported original data relating to adult primary brain tumor or brain metastases; (3) used objective or subjective assessments; (4) reported assessment acceptability or feasibility. The Psychometric And Pragmatic Evidence Rating Scale was used. Consent, assessment commencement and completion, and study completion were extracted along with author-reported acceptability and feasibility data. PROSPERO Registration: CRD42021234794. Across 27 studies, 21 cognitive assessments had been assessed for feasibility and acceptability; 15 were objective assessments. Acceptability data were limited and heterogeneous, particularly consent (not reported in 23 studies), assessment commencement (not reported in 19 studies), and assessment completion (not reported in 21 studies). Reasons for non-completion could be grouped into patient-factors, assessment-factors, clinician-factors, and system-factors. The three cognitive assessments with the most acceptability and feasibility data reported were the MMSE, MoCA, and NIHTB-CB. Further acceptability and feasibility data are needed including consent, commencement and completion rates. Cost, length, time, and assessor burden are needed for the MMSE, MoCA, and NIHTB-CB, along with potentially new computerized assessments suited for busy clinical settings. [ABSTRACT FROM AUTHOR]

BackgroundWith increasing attention given to the quality of chronic disease care, a measurement approach that empowers consumers to participate in improving quality of care and enables health services to systematically introduce patient-centered initiatives is needed. A Web-based survey with complex adaptive questioning and interactive survey items would allow consumers to easily identify and prioritize detailed service initiatives. ObjectiveThe aim was to develop and test a Web-based survey capable of identifying and prioritizing patient-centered initiatives in chronic disease outpatient services. Testing included (1) test-retest reliability, (2) patient-perceived acceptability of the survey content and delivery mode, and (3) average completion time, completion rates, and Flesch-Kincaid reading score. MethodsIn Phase I, the Web-based Consumer Preferences Survey was developed based on a structured literature review and iterative feedback from expert groups of service providers and consumers. The touchscreen survey contained 23 general initiatives, 110 specific initiatives available through adaptive questioning, and a relative prioritization exercise. In Phase II, a pilot study was conducted within 4 outpatient clinics to evaluate the reliability properties, patient-perceived acceptability, and feasibility of the survey. Eligible participants were approached to complete the survey while waiting for an appointment or receiving intravenous therapy. The age and gender of nonconsenters was estimated to ascertain consent bias. Participants with a subsequent appointment within 14 days were asked to complete the survey for a second time. ResultsA total of 741 of 1042 individuals consented to participate (71.11% consent), 529 of 741 completed all survey content (78.9% completion), and 39 of 68 completed the test-retest component. Substantial or moderate reliability (Cohen’s kappa>0.4) was reported for 16 of 20 general initiatives with observed percentage agreement ranging from 82.1%-100.0%. The majority of participants indicated the Web-based survey was easy to complete (97.9%, 531/543) and comprehensive (93.1%, 505/543). Participants also reported the interactive relative prioritization exercise was easy to complete (97.0%, 189/195) and helped them to decide which initiatives were of most importance (84.6%, 165/195). Average completion time was 8.54 minutes (SD 3.91) and the Flesch-Kincaid reading level was 6.8. Overall, 84.6% (447/529) of participants indicated a willingness to complete a similar survey again. ConclusionsThe Web-based Consumer Preferences Survey is sufficiently reliable and highly acceptable to patients. Based on completion times and reading level, this tool could be integrated in routine clinical practice and allows consumers to easily participate in quality evaluation. Results provide a comprehensive list of patient-prioritized initiatives for patients with major chronic conditions and delivers practice-ready evidence to guide improvements in patient-centered care.

Background: Patient‐centered cancer care includes emotional, informational, and practical support that is personalised to the needs of patients and inclusive of family and friends. However, when supportive care referrals are offered in hospital settings, distressed patients and carers do not consistently act on those referrals, which can prolong patient suffering. The degree to which sub‐optimal referral uptake also occurs in Australian telephone support services is unknown. Aims: To report, among a sample of distressed patients and caregivers who called a cancer information and support service: 1) the types of services used; 2) proportion who received and actioned a referral (uptake); 3) associations between referral to a service and callers' characteristics); and, 4) associations between uptake of a referred service and callers' characteristics. Methods: This study used cross‐sectional data collected at 3‐month post‐baseline from control participants (usual care group) enrolled in the Structured Triage and Referral by Telephone (START) trial. The START trial recruited distressed adult cancer patients and caregivers from the Cancer Council Information and Support Service (CIS). A research assistant conducted a 30–45 min telephone interview with participants, which included recall of referrals provided by CIS staff and reported uptake of referral(s) to the offered service types. Results: Most patients (98%) and caregivers (97%) reported receiving a referral to a service. For patients and caregivers respectively, information materials (71%, 77%), CIS call‐back (51%, 43%), practical services (52%, 45%), and group peer support (49%, 51%) were the services most frequently offered. For callers receiving a referral, uptake was highest for information materials (91%) and CIS call‐backs (89%) and lowest for specialist psychological services (30%). Significant association was found between older age and reduced uptake of services (p = 0.03). Conclusion: The high uptake rate of CIS call‐backs suggests it is a potentially more acceptable form of support compared to specialist psychological services. Efforts to reduce the barriers to telephone‐based psychological services are required. Specifically, older age peoples' and caregivers' preferences for support and priorities who may benefit from a referral coordinator. [ABSTRACT FROM AUTHOR]

Background: Many biobanks rely upon patients' willingness to donate biospecimens and healthcare professionals to initiate opt‐in consent processes. This study explored if: (1) patients accept opt‐in or opt‐out consent models with varying levels of professional involvement; (2) professionals discuss participation with specific patient groups; and (3) this discussion is associated with patient knowledge of biobanking processes. Methods: Outpatients completed surveys at a tertiary cancer center in New South Wales, Australia. Eligible participants were English‐speaking adults who recently had cancer‐related surgery. Participants completed 27 questions exploring acceptable consent models, biobanking experiences, knowledge, and willingness. Logistic regression and chi‐square tests examined differences in the characteristics and knowledge of participants who were offered the opportunity to participate versus those who were not. Results: A total of 113 outpatients participated (97% response). Most participants (92%) found opt‐out, patient‐initiated consent acceptable; however, high acceptability was reported for all models except for opt‐in, patient‐initiated consent (58%). University or technical qualifications (P  =  0.001) was associated with increased odds (OR = 4.5) of being offered biobanking. The majority did not know what occurred to samples after surgery (59.3%) or pathology review (81.4%) and ability to answer these questions was associated with discussion of participation (P < 0.001). Of the few outpatients who discussed biobanking with their doctor (29%), all consented. Conclusion: Professional‐initiated, opt‐in consent resulted in a few educated patients being approached; greater professional initiation of consent would be fruitful as most patients were willing to participate if asked. However, other consent approaches minimizing professional involvement were as acceptable to participants warranting further consideration. [ABSTRACT FROM AUTHOR]