What happens to cancer survivors attending a structured cancer survivorship clinic? Symptoms, quality of life and lifestyle changes over the first year at the Sydney Cancer Survivorship Centre clinic.

BACKGROUND: Sydney Cancer Survivorship Centre (SCSC) clinic provides multidisciplinary care after primary adjuvant treatment, with ~ 40% of attendees continuing follow-up with SCSC. METHODS: SCSC survivors completed measures of symptoms, quality-of-life and lifestyle factors at initial visit (T1), first follow-up (T2) and 1 year (T3). Analyses used mixed effect models, adjusted for age, sex and tumour type. RESULTS: Data from 206 survivors (2013-2019) were included: 51% male; median age 63 years; tumour types colorectal 68%, breast 12%, upper gastrointestinal 12%, other 8%. Mean time from: T1 to T2, 3.6 months; T1 to T3, 11.8 months. Mean weight remained stable, but 45% (35/77) of overweight/obese survivors lost weight from T1 to T3. Moderately-intense aerobic exercise increased by 63 mins/week at T2, and 68 mins/week T3. Proportion meeting aerobic exercise guidelines increased from 20 to 41%. Resistance exercise increased by 26 mins/week at T2. Global quality-of-life was unchanged from T1 to T2, improving slightly by T3 (3.7-point increase), mainly in males. Mean distress scores were stable, but at T3 the proportion scoring 4+/10 had declined from 41 to 33%. At T3, improvements were seen in pain, fatigue and energy, but > 20% reported moderate-severe fatigue, pain or sleep disturbance. Proportion reporting 5+ moderate-severe symptoms declined from 35% at T1 to 26% at T3, remaining higher in women. CONCLUSIONS: Survivors attending SCSC increased exercise by 3 months, and sustained it at 1 year. Most overweight/obese survivors avoided further weight gain. Survivors had relatively good quality-of-life, with improvement in many symptoms and lifestyle factors at 1 year.

Health concerns of cancer survivors after primary anti-cancer treatment.

PURPOSE: Cancer survivors experience significant health concerns compared to the general population. Sydney Survivorship Clinic (SSC) is a multi-disciplinary clinic aiming to help survivors treated with curative intent manage side effects, and establish a healthy lifestyle. Here, we determine the health concerns of survivors post-primary treatment. METHODS: Survivors completed questionnaires assessing symptoms, quality of life (QOL), distress, diet, and exercise before attending SSC, and a satisfaction survey after. Body mass index (BMI), clinical findings and recommendations were reviewed. Descriptive statistical methods were used. RESULTS: Overall, 410 new patients attended SSC between September 2013 and April 2018, with 385 survivors included in analysis: median age 57 years (range 18-86); 69% female; 43% breast, 31% colorectal and 19% haematological cancers. Median time from diagnosis, 12 months. Common symptoms of at least moderate severity: fatigue (45%), insomnia (37%), pain (34%), anxiety (31%) and with 56% having > 5 moderate-severe symptoms. Overall, 45% scored distress ≥ 4/10 and 62% were rated by clinical psychologist as having 'fear of cancer recurrence'. Compared to population mean of 50, mean global QOL T-score was 47.2, with physical and emotional well-being domains most affected. Average BMI was 28.2 kg/m2 (range 17.0-59.1); 61% overweight/obese. Only 31% met aerobic exercise guidelines. Overall, 98% 'agreed'/'completely agreed' attending the SSC was worthwhile, and 99% would recommend it to others. CONCLUSION: Distress, fear of cancer recurrence, fatigue, obesity and sedentary lifestyle are common in cancer survivors attending SSC and may best be addressed in a multi-disciplinary Survivorship Clinic to minimise longer-term effects. This model is well-rated by survivors.

Statistical controversies in cancer research: using standardized effect size graphs to enhance interpretability of cancer-related clinical trials with patient-reported outcomes.

Patient reported outcomes (PROs) are becoming increasingly important in cancer studies, particularly with the emphasis on patient centered outcome research. However, multiple PROs, using different scales, with different directions of favorability are often used within a trial, making interpretation difficult. To enhance interpretability, we propose the use of a standardized effect size graph, which shows all PROs from a study on the same figure, on the same scale. Plotting standardized effects with their 95% confidence intervals (CIs) on a single graph clearly showing the null value conveys a comprehensive picture of trial results. We demonstrate how to create such a graph using data from a randomized controlled trial that measured 12 PROs at two time points. The 24 effect sizes and CIs are shown on one graph and clearly indicate that the intervention is effective and sustained.

Impact of physical activity on fatigue and quality of life in people with advanced lung cancer: a randomized controlled trial.

BACKGROUND: Physical activity (PA) improves fatigue and quality of life (QOL) in cancer survivors. Our aim was to assess whether a 2-month PA intervention improves fatigue and QOL for people with advanced lung cancer. METHODS: Participants with advanced lung cancer, Eastern Cooperative Oncology Group performance status (PS) ≤2, >6 months life expectancy, and ability to complete six-min walk test, were stratified (disease stage, PS 0-1 versus 2, centre) and randomized (1:1) in an open-label study to usual care (UC) (nutrition and PA education materials) or experimental intervention (EX): UC plus 2-month supervised weekly PA and behaviour change sessions. Assessments occurred at baseline, 2, 4, and 6 months. The primary endpoint was fatigue [Functional Assessment of Cancer Therapy-Fatigue (FACT-F) questionnaire] at 2 months. The study was designed to detect a difference in mean FACT-F subscale score of 6. Analysis was intention-to-treat using linear mixed models. RESULTS: We recruited 112 patients: 56 (50.4%) were randomized to EX, 55(49.5%) to UC; 1 ineligible. Male 55%; median age 64 years (34-80); 106 (96%) non-small cell lung cancer; 106 (95.5%) stage IV. At 2, 4 and 6 months, 90, 73 and 62 participants were assessed, respectively, with no difference in attrition between groups. There were no significant differences in fatigue between the groups at 2, 4 or 6 months: mean scores at 2 months EX 37.5, UC 36.4 (difference 1.2, 95% CI - 3.5, 5.8, P = 0.62). There were no significant differences in QOL, symptoms, physical or functional status, or survival. CONCLUSIONS: Adherence to the intervention was good but the intervention group did not increase their PA enough compared to the control group, and no difference was seen in fatigue or QOL. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry No. ACTRN12609000971235.

Fatigue in people with localized colorectal cancer who do and do not receive chemotherapy: a longitudinal prospective study.

BACKGROUND: Fatigue is associated with cancer and chemotherapy and may be sustained. Here, we describe a prospective longitudinal study evaluating fatigue and putative mechanisms in people with colorectal cancer (CRC). PATIENTS AND METHODS: People with localized CRC completed the Functional Assessment of Cancer Treatment-Fatigue (FACT-F) questionnaire at baseline (before chemotherapy, if given), 6, 12, and 24 months. Healthy controls (HCs) were assessed at the first three time points. Fatigue was defined by standardized FACT-F scores ≤68/100. Quality-of-life (QoL, assessed by the FACT-G questionnaire), affective, and cognitive symptoms were evaluated. Associations were sought between fatigue, baseline factors, and blood tests (including hemoglobin, cytokines, and sex hormones). Regression analyses, Fisher's exact tests, and Wilcoxon rank-sum tests assessed levels of fatigue at each time point and change in fatigue from baseline. A repeated-measures analysis investigated prognostic factors of fatigue across all time points. RESULTS: A total of 289 subjects with localized CRC (173 received chemotherapy) and 72 HCs were assessed. More CRC patients had fatigue than HCs at baseline (52% versus 26%, P < 0.001). Fatigue was increased in the chemotherapy (CTh) group at 6 months [CTh+ 70% versus CTh- 31% (P < 0.001), HCs 22%] and remained more common at 12 [CTh+ 44% versus CTh- 31% (P = 0.079)] and 24 months [CTh+ 39% versus CTh- 24% (P = 0.047)]. There was no significant difference between those not receiving chemotherapy and HCs at follow-up assessments. Fatigue was associated with poor QoL, affective and cognitive symptoms, but not consistently with cytokine levels. Predictors for sustained fatigue were baseline fatigue, treatment group, cognitive and affective symptoms, poorer QoL, and comorbidities. CONCLUSIONS: CRC patients have more fatigue than HCs at baseline. Fatigue peaks immediately after adjuvant chemotherapy, but remains common for 2 years in those who receive chemotherapy. Cognitive and affective symptoms, QoL, comorbidities, chemotherapy, and baseline fatigue predict for longer term fatigue.

Radiation therapy for people with cancer: what do written information materials tell them?

This study aimed to compare and contrast the contents of different types of written patient information about radiotherapy, namely (1) hospital radiotherapy departments vs. cancer control organisations and (2) generic vs. tumour-specific materials. A coding framework, informed by existing patients' information needs literature, was developed and applied to 54 radiotherapy information resources. The framework comprised 12 broad themes; cancer diagnosis, general information about radiotherapy, treatment planning, daily treatment, side effects, self-care management, external radiotherapy, internal radiotherapy, impact on daily activities, post-treatment, psychosocial health and other content, such as a glossary. Materials produced by cancer organisations contained significantly more information than hospital resources on diagnosis, general radiotherapy information, internal radiotherapy and psychosocial health. However, hospital materials provided more information about treatment planning, daily treatment and the impact on daily activities. Compared to generic materials, tumour-specific resources were superior in providing information about diagnosis, daily treatment, side effects, post-treatment and psychosocial health. Information about internal radiotherapy, prognosis and chronic side effects were poorly covered by most resources. Collectively, hospital and cancer organisation resources complement each other in meeting patients' information needs. Identifying ways to consolidate different information sources could help comprehensively address patients' medical and psychosocial information needs about radiotherapy.

Do active design buildings change health behaviour and workplace perceptions?

BACKGROUND: Occupying new, active design office buildings designed for health promotion and connectivity provides an opportunity to evaluate indoor environment effects on healthy behaviour, sedentariness and workplace perceptions. AIMS: To determine if moving to a health-promoting building changed workplace physical activity, sedentary behaviour, workplace perceptions and productivity. METHODS: Participants from four locations at the University of Sydney, Australia, relocated into a new active design building. After consent, participants completed an online questionnaire 2 months before moving and 2 months after. Questions related to health behaviours (physical activity and sitting time), musculoskeletal issues, perceptions of the office environment, productivity and engagement. RESULTS: There were 34 participants (60% aged 25-45, 78% female, 84% employed full-time); 21 participants provided complete data. Results showed that after the move participants spent less work time sitting (83-70%; P < 0.01) and more time standing (9-21%; P < 0.01), while walking time remained unchanged. Participants reported less low back pain (P < 0.01). Sixty per cent of participants in the new workplace were in an open-plan office, compared to 16% before moving. Participants perceived the new work environment as more stimulating, better lit and ventilated, but noisier and providing less storage. No difference was reported in daily physical activity, number of stairs climbed or productivity. CONCLUSIONS: Moving to an active design building appeared to have physical health-promoting effects on workers, but workers' perceptions about the new work environment varied. These results will inform future studies in other new buildings.

Cognitive function and fatigue after diagnosis of colorectal cancer.

BACKGROUND: Cognitive impairment and fatigue have been associated with cancer and its treatment. We present baseline data from a large longitudinal study that evaluates cognitive function, fatigue, and potential underlying mechanisms following diagnosis of colorectal cancer (CRC). PATIENTS AND METHODS: We evaluated CRC patients with stage I-III disease before or after surgery, participants with limited metastatic disease and healthy controls (HC). Neuropsychological evaluation included clinical and computerised tests. Participants completed questionnaires for fatigue and quality of life (QOL)-(FACT-F), anxiety/depression, and cognitive symptoms (FACT-Cog). Ten cytokines, clotting factors, sex hormones, carcinoembryonic antigen (CEA), and apolipoprotein E genotype were evaluated. Primary end points were cognitive function on clinical tests evaluated by a Global Deficit score (GDS) and fatigue. Associations between test results, demographic, and disease related factors were explored. RESULTS: We assessed 291 participants with early-stage disease [median age 59 (23-75) years, 63% men], 72 with metastatic disease, and 72 HC. Using GDS, 45% (126/281) of participants with early-stage CRC had cognitive impairment versus 15% (11/72) of HC (odds ratio 4.51, 95% confidence interval 2.28-8.93; P < 0.001), with complex processing speed, attention/working memory, and verbal learning efficiency being most affected. Women with early-stage CRC had greater cognitive impairment than men [55/105 (52%) versus 71/176 (40%), P < 0.050]. Cognitive symptoms were self-reported by 21% (59/286) of early-stage patients versus 17% (12/72) of HC; fatigue by 52% (149/287) of early-stage patients and 26% (19/72) of HC (P < 0.0001). Women reported more fatigue than men (P = 0.003). Fatigue, QOL, anxiety/depression, and cognitive symptoms were associated with each other (r = 0.43-0.71), but not with neuropsychological performance. Most cytokines were elevated in cancer patients. Cognitive function was not associated with cytokines, sex hormones, clotting factors, CEA, or apolipoprotein E genotype. CONCLUSIONS: The incidence of cognitive impairment was three to five times higher in CRC patients than HC, with women having higher impairment rates than men. The cognitive impairment profile suggests dysfunction primarily in fronto-subcortical brain systems. TRIAL REGISTRATION: NCT00188331.

Are radiation oncologists aware of health literacy among people with cancer treated with radiotherapy?

Health literacy skills are important for people affected by cancer as they are exposed to complex treatment and follow-up care information. This study aimed to (1) explore radiation oncologists' understandings and awareness of health literacy among patients with a reasonable command of English; (2) gain insight into oncologists' views regarding health literacy; and (3) identify techniques oncologists employ to communicate to different literacy populations. We conducted semi-structured interviews with 26 radiation oncologists. Four key themes were identified: (1) identifying a patient's literacy level; (2) perceived impact of literacy; (3) challenges and strategies to communicating concepts and supporting decision-making; and (4) suggested improvements to the health system. Participants described subjectively assessing a person's literacy level by monitoring the types of questions asked; analysing the language used; examining non-verbal behaviour, and considering a person's socio-economic situation. Participants reported the challenges of discussing the subtleties of cancer treatments with lower literacy groups such as the benefits and risks of treatment options and clinical trials, and tended to provide the basic facts to facilitate understanding. Radiation oncologists acknowledged the importance of health literacy in oncology, and employed a number of techniques to tailor their communication to different literacy populations. Further research is needed to address the challenges faced by oncologists when interacting with different literacy groups.

"Such a different type of tiredness": people with brain tumour, their caregivers', and healthcare professionals' qualitative perceptions of cancer-related fatigue.

PURPOSE: Cancer-related fatigue (CRF) is one of the most common symptoms reported by people with primary brain tumour (BT). Previous research predominantly examined CRF using quantitative assessments, failing to capture the rich insight garnered from exploring individuals' lived experiences. We addressed this gap by qualitatively exploring people with BTs' experiences of CRF. METHODS: Semi-structured interviews were conducted with people with BT, their caregivers, and healthcare professionals (HCPs) who care for them. Interviews explored the experience, impact, and management of CRF, including types of support provided by HCPs. Data were analysed using reflexive thematic analysis. RESULTS: Forty participants were interviewed (24 people with BT, 5 caregivers, 11 HCPs). Qualitative analysis identified four themes: pervasiveness of CRF; impacts of CRF; advice and support; and self-management strategies. CRF was described as an almost universal symptom with physical, emotional, and cognitive aspects and profound psychosocial and functional impacts. HCPs reported assessing fatigue and providing management support. Yet, people with BT and caregivers reported CRF assessment and support were rarely received. Consequently, people with BT developed their own management strategies. All participants identified a lack of CRF information resources and interventions specific to people with BT. CONCLUSION: Our findings provide rich insight into the pervasive, debilitating impact of CRF in people with BT and highlight the lack of BT-specific CRF support and information available. IMPLICATIONS FOR CANCER SURVIVORS: There is a critical need for evidence-based fatigue interventions and information resources tailored to the needs of people with BT.

An exploration of testicular cancer survivors' experience of ejaculatory dysfunction following retroperitoneal lymph node dissection-a sub-study of the PREPARE clinical trial.

PURPOSE: Ejaculatory dysfunction secondary to retrograde ejaculation or anejaculation is a complication of retroperitoneal lymph node dissection (RPLND) for survivors of testicular cancer. We explored survivors' experiences of ejaculatory dysfunction following RPLND. METHODS: In a sub-study of a single-arm phase 2 clinical trial (ACTRN12622000537752/12622000542796), participants reporting ejaculatory dysfunction ≥ 6 months following RPLND were invited to complete semi-structured interviews. Purposive sampling was used. Interviews continued until thematic saturation occurred, and codebook thematic analysis of interviews was performed. RESULTS: Of 58 individuals recruited to the trial, 33 (57%) reported ejaculatory dysfunction. Of these, 32 (97%) agreed to interview and 15 participated. Participants interviewed had median age 34 years (range 24-66), 12 (80%) in a long-term relationship with median time from surgery 36 months (range 11-112). Three overarching themes were identified. The first reflected the value of RPLND despite ejaculatory dysfunction. The second illuminated the impact(s) of ejaculatory dysfunction closely mapped to life stage, with flow-on impacts to fertility, sex, psychological wellbeing and communication. The third reflected information needs. Fertility was a substantial source of concern for some participants. Ejaculatory dysfunction had no effect on sex for some, whilst for others, sex was less pleasurable. Some reported benefits. Few reported ejaculatory dysfunction challenged masculinity, confidence, or self-esteem. CONCLUSIONS: Future research should examine interventions to reduce distress related to fertility, challenged masculinity and body image. IMPLICATIONS FOR CANCER SURVIVORS: Whilst most participants considered ejaculatory dysfunction to have little impact on their sexual function and relationships, some reported significant difficulties varying by life stage and relationship status.

Patients' perceptions of health-related quality of life during and after adjuvant radiotherapy for T1N0M0 breast cancer.

AIMS: The effects of radiotherapy on health-related quality of life (HRQOL) may influence decisions about adjuvant radiotherapy after breast-conserving surgery. We sought women's ratings of HRQOL during and after radiotherapy. MATERIALS AND METHODS: Women completed HRQOL measures before, during and after adjuvant radiotherapy for node-negative, hormone receptor-positive breast cancers that were less than 2 cm in size. Acute and late toxicities were rated by clinicians. RESULTS: There were 161 participants with a median age of 58 years (range 34-82). Mean scores for most aspects of HRQOL worsened only slightly during radiotherapy and improved to baseline levels or better within a few months. The symptoms rated as most distressing were: difficulty sleeping (29%), fatigue (23%), breast discolouration (21%), uncertainty about the future (18%), feeling sad or depressed (18%), feeling anxious or worried (19%). Most rated their experience as better (39%) or much better (28%) than expected. Grade 3 toxicities were rare (5% acute, 1% late) with no grade 4 toxicities. CONCLUSIONS: Radiotherapy was associated with transient and generally mild impairments in a few aspects of HRQOL. Concerns about adverse effects on HRQOL should not weigh heavily on decisions about adjuvant breast radiotherapy.