Nicotinamide for Skin-Cancer Chemoprevention in Transplant Recipients.

BACKGROUND: Immunosuppressed organ-transplant recipients have an increased incidence of, and mortality from, skin cancer. Nicotinamide (vitamin B3) enhances the repair of ultraviolet (UV) radiation-induced DNA damage, reduces the cutaneous immunosuppressive effects of UV radiation, and reduces the incidence of keratinocyte cancers (including squamous-cell and basal-cell carcinomas) and actinic keratoses among high-risk immunocompetent patients. Whether oral nicotinamide is useful for skin-cancer chemoprevention in organ-transplant recipients is unclear. METHODS: In this phase 3 trial, we randomly assigned, in a 1:1 ratio, organ-transplant recipients who had had at least two keratinocyte cancers in the past 5 years to receive 500 mg of nicotinamide or placebo twice daily for 12 months. Participants were examined for skin lesions by dermatologists at 3-month intervals for 12 months. The primary end point was the number of new keratinocyte cancers during the 12-month intervention period. Secondary end points included the numbers of squamous-cell and basal-cell carcinomas during the 12-month intervention period, the number of actinic keratoses until 6 months after randomization, safety, and quality of life. RESULTS: A total of 158 participants were enrolled, with 79 assigned to the nicotinamide group and 79 to the placebo group. The trial was stopped early owing to poor recruitment. At 12 months, there were 207 new keratinocyte cancers in the nicotinamide group and 210 in the placebo group (rate ratio, 1.0; 95% confidence interval, 0.8 to 1.3; P = 0.96). No significant between-group differences in squamous-cell and basal-cell carcinoma counts, actinic keratosis counts, or quality-of-life scores were observed. Adverse events and changes in blood or urine laboratory variables were similar in the two groups. CONCLUSIONS: In this 12-month, placebo-controlled trial, oral nicotinamide therapy did not lead to lower numbers of keratinocyte cancers or actinic keratoses in immunosuppressed solid-organ transplant recipients. (Funded by the National Health and Medical Research Council; ONTRANS Australian New Zealand Clinical Trials Registry number, ACTRN12617000599370.).

Measuring serum oestrogen levels in breast cancer survivors using vaginal oestrogens: a systematic review.

PURPOSE: Vaginal oestrogens can be used to treat genitourinary symptoms in women with early breast cancer. Studies evaluating vaginal oestrogens have commonly measured serum oestrogen levels as a surrogate marker of safety, but methods vary. We sought to summarise the data on serum oestrogen measurement in women with breast cancer using vaginal oestrogens to better understand the methods, levels and reliability. METHODS: We searched Medline, Embase, CENTRAL, SCOPUS and CINAHL from inception to October 2023 for clinical studies where serum oestrogen was measured in women with a history of early breast cancer using vaginal oestrogens. Studies with a reported testing methodology were included. RESULTS: Nine studies met the inclusion criteria for this systematic review. Methods used to measure oestradiol and oestriol in selected studies included mass spectrometry and immunoassays; several studies used more than one with variable concordance. Mass spectrometry detected oestradiol levels down to a lower limit between 1.0 pg/mL and 3.0 pg/mL. Immunoassays such as ELISA (enzyme-linked immunosorbent assay), ECLIA (enhanced chemiluminiscence immunoassay) and RIA (radioimmunoassay) had lower detection limits ranging between 0.8 pg/mL and 10 pg/mL. Studies were heterogeneous in testing techniques used, timing of testing, and the population including with subsequent varying results in the effect on oestrogens reported. CONCLUSIONS: Adopting consistent and standardised methods of measuring oestrogens in clinical trials involving women with early breast cancer on vaginal oestrogens is critical. Serum oestrogens are used as a surrogate marker of safety in this population, and good-quality data are necessary to enable clinicians and patients to feel confident in prescribing and taking vaginal oestrogens. Mass spectrometry, although more expensive, gives more reliable results when dealing with very low levels of oestrogens often found in women on aromatase inhibitors, compared to immunoassays.

Psychosocial Factors Associated with Cognitive Function in Prostate Cancer Survivors on Hormonal Treatments: A Systematic Review.

Hormonal treatments (HT) for prostate cancer (e.g., androgen deprivation therapy) yield clinical and survival benefits, yet adverse cognitive changes may be a side effect. Since psychosocial factors are largely modifiable, interventions targeting these factors may help mitigate these adverse cognitive effects. This systematic review aimed to identify a range of psychosocial factors associated with cognitive function in individuals with prostate cancer undergoing HT and to determine whether these factors mitigate or exacerbate this effect. Applying PRISMA guidelines, a comprehensive search of relevant databases conducted in September 2023 using terms related to prostate cancer, hormone therapy, and cognitive outcomes was undertaken. The search yielded 694 unique abstracts, with 11 studies included for analysis examining the relationship between cognitive function and the following psychosocial factors: psychological distress, fatigue, insomnia, and coping processes. Findings were mixed with only two studies reporting significant associations between cognitive performance with fatigue and depression. Three studies that included measures of perceived cognitive function identified associations with depression, anxiety, fatigue, insomnia, illness threat appraisals, and coping styles. However, no studies found evidence for an association between self-reported and objective measures of cognitive functioning. Evidence regarding the association of interpersonal factors is lacking. Moreover, whether these factors mitigate or exacerbate the effect of HT on cognitive function still needs to be determined. Overall, the research exploring the association between psychosocial factors and cognitive function in prostate cancer survivors undergoing HT is still in its infancy. Further research is required to optimize the implementation of neuropsychological interventions for prostate cancer survivors.

Pseudoephedrine for ejaculatory dysfunction after retroperitoneal lymph node dissection in testicular cancer.

OBJECTIVE: To assess the impact of ejaculatory dysfunction (EjD; failure of emission or retrograde ejaculation) on health-related quality of life (HRQoL) after retroperitoneal lymph node dissection (RPLND) for testicular cancer and explore the efficacy of pseudoephedrine hydrochloride as treatment. PATIENTS AND METHODS: In a single arm, phase II trial, patients at ≥6 months after RPLND were invited to complete patient-reported outcome measures (European Organisation for Research and Treatment of Cancer [EORTC] quality of life questionnaire [QLQ]-30-item core, EORTC QLQ-testicular cancer-26, and Brief Male Sexual Function Inventory) evaluating HRQoL and sexual function in follow-up (ACTRN12622000537752/12622000542796). If EjD was reported, post-ejaculatory urine ± semen analysis was undertaken. In eligible patients, pseudoephedrine hydrochloride 60 mg was administered orally every 6 h for six doses. The primary endpoint was sperm count >39 million sperm/ejaculate (>5th centile) following treatment. The trial was powered to detect a clinically relevant 36% achieving sperm count of >39 million sperm/ejaculate. Secondary endpoints included semen volume >1.5 mL, total motile sperm count, safety, and HRQoL impacts. RESULTS: Of the 58 patients enrolled, the median (interquartile range [IQR]) age was 35 (29-41) years, with a median (IQR) of 37 (18-60) months from RPLND. EjD was reported in 33 (57%), including 27/52 (52%) receiving follow-up at our centre. There were no differences in global HRQoL; however, role functioning (P = 0.045), sexual problems (P < 0.005), and sexual enjoyment (P = 0.005) was poorer if EjD was present. In all, 24/33 (73%) patients with EjD consented to pseudoephedrine treatment. Of 22 evaluable patients, four (18%) achieved a sperm count of >39 million/ejaculate (P = 0.20), and four (18%) had a semen volume of >1.5 mL (P = 0.20). There was a mean increase of 105 million sperm/ejaculate (P = 0.051) and 1.47 mL increase in semen volume (P = 0.01). No safety concerns arose. CONCLUSION: Ejaculatory dysfunction is common after RPLND but did not impact global HRQoL in our cohort. Pseudoephedrine improved EjD for some; however, its efficacy was lower than expected. Pseudoephedrine may be considered on an individualised basis.

The Dedicated Imaging Post-Prostatectomy for Enhanced Radiotherapy outcomes (DIPPER) trial protocol: a multicentre, randomised trial of salvage radiotherapy versus surveillance for low-risk biochemical recurrence after radical prostatectomy.

BACKGROUND: Salvage radiation therapy (SRT) and surveillance for low-risk prostate-specific antigen (PSA) recurrence have competing risks and benefits. The efficacy of early SRT to the prostate bed with or without pelvic lymph nodes compared to surveillance in patients with PSA recurrence after radical prostatectomy and no identifiable recurrent disease evident on prostate specific membrane antigen-positron emission tomography/computer tomography (PSMA-PET/CT) is unknown. STUDY DESIGN: The Dedicated Imaging Post-Prostatectomy for Enhanced Radiotherapy outcomes (DIPPER) is an open-label, multicentre, randomised Phase II trial. ENDPOINTS: The primary endpoint is 3-year event-free survival, with events comprising one of PSA recurrence (PSA ≥0.2 ng/mL higher than baseline), radiological evidence of metastatic disease, or initiation of systemic or other salvage treatments. Secondary endpoints include patient-reported outcomes, treatment patterns, participant perceptions, and cost-effectiveness. ELIGIBILITY CRITERIA: Eligible participants have PSA recurrence of prostate cancer after radical prostatectomy, defined by serum PSA level of 0.2-0.5 ng/mL, deemed low risk according to modified European Association of Urology biochemical recurrence risk criteria (International Society for Urological Pathology Grade Group ≤2, PSA doubling time >12 months), with no definite/probable recurrent prostate cancer on PSMA-PET/CT. PATIENTS AND METHODS: A total of 100 participants will be recruited from five Australian centres and randomised 1:1 to SRT or surveillance. Participants will undergo 6-monthly clinical evaluation for up to 36 months. Androgen-deprivation therapy is not permissible. Enrolment commenced May 2023. TRIAL REGISTRATION: This trial has been registered with the Australian New Zealand Clinical Trials Registry (ACTRN: ACTRN12622001478707).

What is the nature and impact of cognitive difficulties following hormonal treatments for prostate cancer?: An interpretative phenomenological analysis.

OBJECTIVE: Prostate cancer hormonal treatments (e.g. androgen deprivation therapy) yield clinical benefits. However, there is increasing evidence these treatments may adversely impact cognitive functioning. This study aimed to qualitatively characterise the nature and impact of cognitive difficulties following these treatments. METHODS: Prostate cancer survivors (PCS) self-reporting cognitive difficulties following hormonal treatments (via an online survey) and their partners were invited to participate in semi-structured interviews. Telephone or videoconferencing interviews were conducted, then transcribed, double-coded and analysed using the Framework Method, following the principles of Interpretative Phenomenological Analysis. RESULTS: Eleven participants (six PCS and five partners) were interviewed. PCS reported a range of cognitive difficulties, verified by their partners, including forgetfulness, "fogginess", fatigue and slowed processing speed. For some PCS, word-finding difficulties, tangential speech and memory problems were apparent during interviews. The aetiology of the reported cognitive difficulties was unclear as it was attributed to a possible combination of cancer treatments, compounding side-effects (e.g. fatigue, sleep problems, hot flashes), exacerbation of pre-existing conditions and/or age-related changes. Cognitive difficulties were reported to have led to shifts in self-perception, interpersonal dynamics and increased emotionality. Engagement in cognitively-stimulating activities and reliance on compensatory strategies were reported to be helpful in managing some cognitive difficulties. All participants endorsed the potential benefits of neuropsychological intervention. CONCLUSIONS: There are a diverse range of cognitive difficulties following hormonal treatments for prostate cancer experienced by PCS and their partners. Understanding the impact of these difficulties is important for the development of targeted neuropsychological interventions.

Cancer-related cognitive impairment and wellbeing in patients with newly diagnosed aggressive lymphoma compared to population norms and healthy controls: an exploratory study.

PURPOSE: There has been little dedicated research on cancer-related cognitive impairment in patients with aggressive lymphoma. We describe and compare patients' cognitive function with that of healthy controls and patients' wellbeing and distress with general population values. We also explore associations between patients' neuropsychological test performance and self-reported cognitive function and distress. METHODS: Secondary analysis of data from a feasibility study of 30 patients with newly diagnosed aggressive lymphoma and 72 healthy controls. Patients completed neuropsychological tests and self-report measures before and 6-8 weeks after chemotherapy. Healthy controls completed neuropsychological tests and the FACT-Cog at enrolment and 6 months later. Mixed models were used to analyze neuropsychological test and FACT-Cog scores. One-sample t-tests were used to compare patients' self-reported wellbeing and distress with population norms. Associations were explored with Kendall's Tau b. RESULTS: Patients and healthy controls were well matched on socio-demographics. Differences between neuropsychological test scores were mostly large-sized; on average, patients' scores on measures of information processing speed, executive function, and learning and memory were worse both before and after chemotherapy (all p ≤ 0.003). The same pattern was observed for impact of perceived cognitive impairment on quality-of-life (both p < 0.001). Patients' physical and emotional wellbeing scores were lower than population norms both before and after chemotherapy (all p ≤ 0.018). Associations between neuropsychological performance and other measures were mostly trivial (all p > 0.10). CONCLUSION: For many patients with aggressive lymphoma, impaired neuropsychological test performance and impact of perceived impairments on quality-of-life precede chemotherapy and are sustained after chemotherapy. Findings support the need for large-scale longitudinal studies with this population to better understand targets for interventions to address cognitive impairments.

Telehealth cognitive behaviour therapy for the management of sleep disturbance in women with early breast cancer receiving chemotherapy: a feasibility study.

PURPOSE: Sleep quality commonly deteriorates in people receiving chemotherapy for breast cancer (BC). We aimed to determine feasibility and acceptability of telehealth-delivered cognitive behaviour therapy for insomnia (CBT-I) in people with early BC receiving (neo)adjuvant chemotherapy. METHODS: Multi-centre, single arm, phase 2 feasibility trial. People with stage I-III BC received 4 sessions of telehealth CBT-I over 8 weeks, during chemotherapy. Participants completed Pittsburgh Sleep Quality Index (PSQI) and other Patient Reported Outcome Measures (PROMs) at baseline, post-program (week 9) and post-chemotherapy (week 24); and an Acceptability Questionnaire at week 9. Primary endpoint was proportion completing 4 sessions of telehealth CBT-I. RESULTS: In total, 41 participants were recruited: mean age 51 years (range 31-73). All 4 CBT-I sessions were completed by 35 (85%) participants. Acceptability of the program was high and 71% reported 'the program was useful'. There was no significant difference in the number of poor sleepers (PSQI score ≥ 5) at baseline 29/40 (73%) and week 24 17/25 (68%); or in the mean PSQI score at baseline (7.43, SD 4.06) and week 24 (7.48, SD 4.41). From baseline to week 24, 7/25 (28%) participants had a ≥ 3 point improvement in sleep quality on PSQI, and 5/25 (20%) had a ≥ 3 point deterioration. There was no significant difference in mean PROM scores. CONCLUSION: It is feasible to deliver telehealth CBT-I to people with early BC receiving chemotherapy. Contrary to literature predictions, sleep quality did not deteriorate. Telehealth CBT-I has a potential role in preventing and managing sleep disturbance during chemotherapy. Australian New Zealand Clinical Trials Registry (ANZCTR) registration number: ACTRN12620001379909 and date 22/12/2020.

Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results.

BACKGROUND: High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress. METHODS: We conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients' combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs; (2) tailored hard-copy resource folder; (3) home visit; and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. RESULTS: We randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model ß = 2.85, 95% CI 0.76-4.93) and all follow-up timepoints including 12 months (model ß = 4.35, 95% CI 2.08-6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes. CONCLUSIONS: This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating/progressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.

Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives.

OBJECTIVES: Ongoing access to psychosocial support is important to maintain the well-being of people with brain tumor (PwBT) and their families; yet, there is limited knowledge of psychosocial care access. This qualitative study aimed to develop an understanding of psychosocial support pathways specific to PwBT from the perspectives of Australian healthcare professionals. METHODS: Semi-structured interviews were conducted with 21 healthcare professionals working in hospital and community services supporting PwBT and their family members. Transcribed interviews were coded and analyzed thematically. RESULTS: The three major themes identified were: (1) Challenges in fitting people into the care system within existing pathways; (2) Benefits of longer-term care coordination and interdisciplinary connections; and (3) Brain tumor affects the whole family. Despite established psychosocial care pathways, service access varied and lacked continuity for individuals with lower-grade glioma and benign tumors across the illness trajectory. CONCLUSIONS: Healthcare professionals recognize the need for improved access to care coordination and multidisciplinary psychosocial care tailored to the varying needs of PwBT and their families.

Evaluation of the validity and screening performance of a revised single-item fear of cancer recurrence screening measure (FCR-1r).

OBJECTIVE: Fear of cancer recurrence (FCR) is highly prevalent among cancer survivors, but irregularly identified in practice. Single-item FCR measures suitable for integration into broader psychosocial screening are needed. This study evaluated the validity of a revised version of the original FCR-1 (FCR-1r) and screening performance alongside the Edmonton Symptom Assessment System - Revised (ESAS-r) anxiety item. METHODS: The FCR-1r was adapted from the FCR-1 and modelled on the ESAS-r. Associations between FCR-1r and FCR Inventory-Short Form (FCRI-SF) scores determined concurrent validity. Relationships of FCR-1r scores with variables related (e.g., anxiety, intrusive thoughts) and unrelated (e.g., employment/marital status) to FCR determined convergent and divergent validity respectively. A Receiver-Operating Characteristic analysis examined screening performance and cut-offs for the FCR-1r and ESAS-r anxiety item. RESULTS: 107 participants were recruited in two studies (Study 1, July-October 2021, n = 54; Study 2: November 2021-May 2022, n = 53). The FCR-1r demonstrated concurrent validity against the FCRI-SF (r = 0.83, p < 0.0001) and convergent validity versus the Generalised Anxiety Disorder-7 (r = 0.63, p < 0.0001) and Impact of Event Scale-Revised Intrusion subscale (r = 0.55, p < 0.0001). It did not correlate with unrelated variables (e.g., employment/marital status), indicating divergent validity. An FCR-1r cut-off ≥5/10 had 95% sensitivity and 77% specificity for detecting clinical FCR (area under the curve (AUC) = 0.91, 95% CI 0.85-0.97, p < 0.0001); ESAS-r anxiety cut-off ≥4 had 91% sensitivity and 82% specificity (AUC = 0.87, 95% CI 0.77-0.98, p < 0.0001). CONCLUSIONS: The FCR-1r is a valid and accurate tool for FCR screening. Further evaluation of the screening performance of the FCR-1r versus the ESAS-r anxiety item in routine care is needed.

Is there a need for change in cancer survivorship care? A qualitative exploration of survivor experiences and needs at the Sydney Cancer Survivorship Centre Clinic.

PURPOSE: Effective cancer survivorship care is contingent on a comprehensive understanding and management of the dynamic needs of cancer survivors. The Sydney Cancer Survivorship Centre (SCSC) clinic established a holistic, multidisciplinary model of survivorship care. We aimed to explore survivors' experiences and perceptions of the clinic, and to identify their unmet needs. METHODS: Semi-structured focus groups (FGs) involving participants recruited from the SCSC clinic were conducted by an experienced facilitator and observer using a guide covering: survivor perceptions of first SCSC clinic visit, services accessed, ongoing unmet needs, and how needs changed over time. FGs were audio-recorded and transcribed. Interpretive description using a Framework approach was undertaken and participant characteristics summarised descriptively. RESULTS: Eight FGs were conducted involving a total of 26 participants (mean age: 60), most were female (n = 20), born in Australia (n = 14), and with breast cancer diagnoses (n = 16). Four overarching themes were identified: (i) perceptions of the SCSC clinic; (ii) patient-centred care; (iii) adjustment to illness; and (iv) external supports and resources. Participants valued the centralisation of multidisciplinary survivorship care at the SCSC clinic, which helped their recovery. Mitigating ongoing treatment sequelae, reassurance of good-health, normalisation of survivorship experiences, and handling caregiver stress represent some needs identified. CONCLUSIONS: The SCSC clinic offers holistic, specialised care and reassurance to cancer survivors. Adjustment to the survivorship journey, inter-survivor shared experiences, and management of physical treatment sequelae were perceived as important in their recovery. Managing survivor needs is integral to improving long-term survivorship care.

An education resource for human papillomavirus oropharyngeal cancer patients: think-aloud interviews.

PURPOSE: The human papillomavirus (HPV) is well recognised as a factor in developing oropharyngeal cancer (OPC). A booklet for HPV-OPC patients aimed to deliver evidence-based messages in everyday language, in a way to minimise negative psychological impacts on patients. Our study explored the suitability of the booklet for use. METHODS: Participants were recruited through social media and interviewed via Zoom. Participants were shown the booklet and a think-aloud method elicited real-time reactions to the content. Responses were analysed for each section and coded as either for or against for content, with other responses thematically analysed using NVivo. RESULTS: The sample comprised 24 participants: patients (n = 19) who completed treatment for HPV-OPC and partners of survivors of HPV-OPC (n = 5). All participants found the booklet useful, and most wished the resource had been available previously. Some indicated the information was new to them. The majority agreed the booklet would be best delivered by their specialist at point of diagnosis and would be a useful resource for friends and family. Most participants gave feedback on improvements to the booklet in terms of comprehension and design. Overall, participants found the content easy to understand. Most participants found that it helped to reduce shame and stigma associated with HPV as a sexually transmitted infection. CONCLUSION: An evidence-based booklet for HPV-OPC patients and their partners is acceptable. Implementation may be feasible in routine clinical practice, specifically at time of diagnosis. Adapting the content will help optimise the efficacy of the booklet in facilitating communication between all stakeholders.

Bereavement outcomes of carers of patients with high grade glioma: Experiences of support before and after the death.

Carers of people with High Grade Glioma (HGG) completed a survey assessing their anxiety, depression, and grief in addition to open-ended questions exploring their experiences of support pre- and post-death (N = 25). One-third reported borderline or clinical levels of anxiety, depression, and grief related distress. Given the poor prognosis and rapid deterioration of patients with HGG, the findings highlight the importance of sensitive communication about prognosis early in the disease trajectory, information tailored to disease stage, the initiation of a referral to psychological support services, and timely discussions about the preferred place of care and death.

What is the optimal tool for measuring abortion stigma? A systematic review.

PURPOSE: Abortion stigma is a barrier to accessing and delivering comprehensive, sustainable healthcare. This study aimed to systematically identify measures of abortion stigma, and assess their psychometric properties and uses. MATERIALS AND METHODS: The systematic review was preregistered with PROSPERO (ID#127339) and adhered to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Eight databases were screened for articles measuring abortion stigma. Data were extracted by four researchers and checked for accuracy by two reviewers. Psychometric properties were assessed with COSMIN guidelines. RESULTS: Of 102 articles reviewed, 21 reported original measures of abortion stigma. Instruments assessed individual and community level stigma for people who have had an abortion (n = 8), healthcare professionals (n = 4), and the public (n = 9), and predominantly originated from the United States (U.S.). Measures varied in structure, use, and comprehensiveness of psychometric properties. On psychometric properties, the Individual Level Abortion Stigma scale and Abortion Provider Stigma Scale - Revised performed best for individual-level stigma and the Stigmatising Attitudes, Beliefs and Actions Scale for community-level stigma. CONCLUSION: Gaps in abortion stigma measurement include geography, conceptualisation, and structural-level stigma. Continued development and testing of tools and methods for measuring abortion stigma is needed.

A range of methods are available to measure abortion stigma, however with gaps in psychometrics, geography, and structural-level stigma. Continued development and testing of tools measuring abortion stigma is required for valid and reliable measurement, models, and intervention.

Supportive care of patients diagnosed with high grade glioma and their carers in Australia.

PURPOSE: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. METHODS: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. RESULTS: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93-100%) and mental health professionals (60-85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. CONCLUSIONS: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways.

Scoping the psychological support practices of Australian health professionals working with people with primary brain tumor and their families.

OBJECTIVES: This study aimed to scope the psychological support practices of Australian health professionals providing supportive care to adults with primary brain tumor. METHOD: Health professionals from multidisciplinary organizations and cancer support services completed an online survey focused on psychological support for people with brain tumor (PwBT) and family members, and perceived barriers or gaps in support provision. RESULTS: 107 professionals, mainly from psychology (45%), nursing (20%), and social work (10%) backgrounds, completed the survey. Scope of practice differed according to discipline, with psychologists and nurses most likely to screen for psychological distress (71%-76%), and psychologists more typically providing at least one psychological support session (78%). Psychologists were more likely to screen for cognitive impairment (31%), whereas nurses and social workers more commonly provided family-based support (62%-73%). Psychological support was more frequently provided in the long-term management phase (78%) than early post-diagnosis/treatment (45%). System-level barriers to accessing psychological support were most frequently identified, which included limited resources and funding, insufficient staff time, lengthy waitlists and costs, poor service coordination, and lack of staff with brain tumor-specific training. CONCLUSIONS: The provision of psychological support for PwBT varies according to discipline, setting and management phase. Further research on different models of psychosocial care is needed to inform strategies to address organizational and policy factors impacting professionals' scope of practice.

Self-reported lack of energy or feeling depressed 12 months after treatment in men diagnosed with prostate cancer within a population-based registry.

OBJECTIVE: Feeling depressed and lethargic are common side effects of prostate cancer (PCa) and its treatments. We examined the incidence and severity of feeling depressed and lack of energy in patients in a population based PCa registry. METHODS: We included men diagnosed with PCa between 2015 and 2019 in Victoria, Australia, and enrolled in the Prostate Cancer Outcomes Registry. The primary outcome measures were responses to two questions on the Expanded Prostate Cancer Index Composite (EPIC-26) patient reported instrument: problems with feeling depressed and problems with lack of energy 12 months following treatment. We evaluated associations between these and age, cancer risk category, treatment type, and urinary, bowel, and sexual function. RESULTS: Both outcome questions were answered by 9712 out of 12,628 (77%) men. 981 patients (10%) reported at least moderate problems with feeling depressed; 1563 (16%) had at least moderate problems with lack of energy and 586 (6.0%) with both. Younger men reported feeling depressed more frequently than older men. Lack of energy was more common for treatments that included androgen deprivation therapy than not (moderate/big problems: 31% vs. 13%), irrespective of disease risk category. Both outcomes were associated with poorer urinary, bowel, and sexual functional domain scores. CONCLUSIONS: Self-reported depressive feelings and lack of energy were frequent in this population-based registry. Problems with feeling depressed were more common in younger men and lack of energy more common in men having hormonal treatment. Clinicians should be aware of the incidence of these symptoms in these at-risk groups and be able to screen for them.

Australian oncology health professionals' knowledge, perceptions, and clinical practice related to cancer-related cognitive impairment and utility of a factsheet.

PURPOSE: Cancer-related cognitive impairment (CRCI) can have debilitating effects on cancer survivors' quality of life. Despite this, patients often report a lack of information provided by health professionals (HPs) to assist with understanding and managing cognitive changes. This study aimed to explore Australian oncology HPs' understanding of and clinical practice related to CRCI including the use of a Cancer Council Australia CRCI factsheet. METHODS: Australian oncology HPs (medical oncologists, cancer nurses, and clinical psychologists) completed a questionnaire that assessed CRCI knowledge, prior to receiving the factsheet. Semi-structured interviews were conducted to explore their perceptions of CRCI and the factsheet. Interviews were recorded, transcribed, and analyzed using framework analysis to identify key themes. RESULTS: Questionnaires were completed by twenty-nine HPs. Most HPs had moderate to high knowledge of CRCI, yet low knowledge of the relationship between CRCI and cancer. Twenty-six (response rate 90%) HPs; medical oncologists (n = 7), cancer nurses (n = 12), and clinical psychologists (n = 7), consented to be interviewed. Three main themes were identified: (1) Is CRCI impact real or over-rated?; (2) If it is important, they will tell me: identifying and responding to CRCI in clinical practice; and (3) Using a factsheet in clinical practice. CONCLUSION: This study's multi-disciplinary exploration of Australian oncology HPs' perceptions of CRCI highlighted that health professional perceptions drive CRCI discussions with patients. Further education to support clinicians to discuss CRCI is required. Consideration of the barriers and facilitators within healthcare settings is important for successful integration of the factsheet into routine care.

Cancer-related cognitive impairment: a mixed methods evaluation of a standard factsheet.

PURPOSE: To understand the impact of cancer survivors accessing a standard factsheet regarding cancer-related cognitive impairment (CRCI), publicly available to the Australian public via Cancer Council Australia's websites. METHODS: Twenty-three cancer survivors completed a questionnaire assessing pre-factsheet knowledge of CRCI. Semi-structured interviews were conducted to explore participants' experiences of CRCI and perceptions of the factsheet. Interviews were analysed via thematic analysis using a framework approach. Finally, participants completed another questionnaire assessing post-factsheet change in knowledge of CRCI. RESULTS: Pre- and post-factsheet questionnaire change scores indicated increased knowledge and greater confidence about CRCI. Interview data resulted in five themes: generally positive perceptions of the factsheet's layout and wording; survivors, regardless of treatments received, experienced CRCI symptoms, with some having strong negative emotional responses to their symptoms; perceptions of the factsheet's strategies to manage CRCI ranged from relevant and useful, to impractical or unrealistic if symptoms were too severe; interactions with healthcare system influenced survivors' perceptions of help-seeking, with negative healthcare experiences a major barrier; and generally positive impacts of the factsheet, with survivors praising the factsheet's ability to validate the CRCI experience, increase CRCI knowledge, influence health beliefs, and prompt help-seeking. CONCLUSION: The factsheet presentation and wording were acceptable to participants. Its ability to normalise and raise awareness for CRCI validated participants' symptoms. The factsheet's potential as a first-line intervention in a stepped-care approach was identified, with participants finding the suggested self-management strategies practical. The factsheet may overcome barriers to self-reporting by encouraging patients to talk with HCPs about CRCI.