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.

Pharmacogenetics testing (DPYD and UGT1A1) for fluoropyrimidine and irinotecan in routine clinical care: Perspectives of medical oncologists and oncology pharmacists.

BACKGROUND: Despite robust evidence and international guidelines, to support routine pharmacogenetic (PGx) testing, integration in practice has been limited. This study explored clinicians' views and experiences of pre-treatment DPYD and UGT1A1 gene testing and barriers to and enablers of routine clinical implementation. METHODS: A study-specific 17-question survey was emailed (01 February-12 April 2022) to clinicians from the Medical Oncology Group of Australia (MOGA), the Clinical Oncology Society of Australia (COSA) and International Society of Oncology Pharmacy Practitioners (ISOPP). Data were analysed and reported using descriptive statistics. RESULTS: Responses were collected from 156 clinicians (78% medical oncologists, 22% pharmacists). Median response rate of 8% (ranged from 6% to 24%) across all organisations. Only 21% routinely test for DPYD and 1% for UGT1A1. For patients undergoing curative/palliative intent treatments, clinicians reported intent to implement genotype-guided dosing by reducing FP dose for DPYD intermediate metabolisers (79%/94%), avoiding FP for DPYD poor metabolisers (68%/90%), and reducing irinotecan dose for UGT1A1 poor metabolisers (84%, palliative setting only). Barriers to implementation included: lack of financial reimbursements (82%) and perceived lengthy test turnaround time (76%). Most Clinicians identified a dedicated program coordinator, i.e., PGx pharmacist (74%) and availability of resources for education/training (74%) as enablers to implementation. CONCLUSION: PGx testing is not routinely practised despite robust evidence for its impact on clinical decision making in curative and palliative settings. Research data, education and implementation studies may overcome clinicians' hesitancy to follow guidelines, especially for curative intent treatments, and may overcome other identified barriers to routine clinical implementation.

Patient and healthcare professional acceptability of pharmacogenetic screening for DPYD and UGT1A1: A cross sectional survey.

This study explored the acceptability of a novel pharmacist-led pharmacogenetics (PGx) screening program among patients with cancer and healthcare professionals (HCPs) taking part in a multicenter clinical trial of PGx testing (PACIFIC-PGx ANZCTR:12621000251820). Medical oncologists, oncology pharmacists, and patients with cancer from across four sites (metropolitan/regional), took part in an observational, cross-sectional survey. Participants were recruited from the multicenter trial. Two study-specific surveys were developed to inform implementation strategies for scaled and sustainable translation into routine clinical care: one consisting of 21 questions targeting HCPs and one consisting of 17 questions targeting patients. Responses were collected from 24 HCPs and 288 patients. The 5-to-7-day PGx results turnaround time was acceptable to HCP (100%) and patients (69%). Most HCPs (92%) indicated that it was appropriate for the PGx clinical pharmacist to provide results to patients. Patients reported equal preference for receiving PGx results from a doctor/pharmacist. Patients and HCPs highly rated the pharmacist-led PGx service. HCPs were overall accepting of the program, with the majority (96%) willing to offer PGx testing to their patients beyond the trial. HCPs identified that lack of financial reimbursements (62%) and lack of infrastructure (38%) were the main reasons likely to prevent/slow the implementation of PGx screening program into routine clinical care. Survey data have shown overall acceptability from patients and HCPs participating in the PGx Program. Barriers to implementation of PGx testing in routine care have been identified, providing opportunity to develop targeted implementation strategies for scaled translation into routine practice.

Pre-diagnostic routes to colorectal cancer in Central New Zealand: factors that lead to emergency presentation and longer diagnostic intervals at primary and secondary level care.

Introduction Although international large-scale studies have investigated routes to diagnosis for colorectal cancer, there is limited information on how New Zealanders seek help for bowel symptoms across different pre-diagnostic routes. Aim To better understand pre-diagnostic routes for colorectal cancer, including the characteristics of patients and key events associated with each route. Methods This study was a retrospective audit of hospital administrative and medical records for 120 patients with a confirmed diagnosis of colorectal cancer between 2016 and 2017. All patients were receiving care at one of two hospitals in central New Zealand; one urban and one rural. Extracted data were used to: categorise pre-diagnostic routes for colorectal cancer; describe the characteristics of people who presented by each route; and compare key events in the diagnostic and treatment intervals for people who presented by each route. Results Six routes to the diagnosis of colorectal cancer were identified. The three main routes included: routine general practitioner (GP) referral (28%, 95% CI: 21-37%), emergency presentation (27%, 95% CI: 20-35%), and other outpatient services (26%, 95% CI: 19-34%). Patients diagnosed by routine GP referral had the longest time to diagnosis, impacting on timeliness of treatment. Discussion This study has generated detailed insights about pre-diagnostic routes for colorectal cancer in New Zealand and shown consistency with findings from previously published international research. The granular findings can now inform areas for person- and system-level interventions that, in turn, could be tested in future studies to minimise emergency department and late presentations for colorectal cancer treatment in New Zealand.

Defining Expertise in Cancer Nursing Practice.

BACKGROUND: Thirty-five years ago, Benner defined an expert nurse as one who applies deep knowledge and experience across different contexts and clinical situations. Since that time, there has been little exploration of expertise in cancer nursing. OBJECTIVES: To explore and describe characteristics of expert cancer nurses and to consider whether Benner's typology of an expert nurse remains relevant in today's complex oncology settings. METHODS: An exploratory, descriptive study using audio-recorded focus group methodology was undertaken. Audio-recordings were transcribed, and an inductive thematic analysis approach applied to the data. Nurses also documented key characteristics of expert practice on Post-it notes to illustrate dominant characteristics. RESULTS: Twenty-four registered nurses from a comprehensive cancer center in Australia took part in 1 of 3 focus groups. Seven key themes were identified: knowledge, leadership, adaptability, communication, motivation, patient-centered care, organization, and culture. Key word cloud characteristics included knowledge, compassion, motivation, experience, and communication. CONCLUSIONS: Many of the expert characteristics identified in this study reflect traits common to other nursing specialty groups. Of particular relevance to cancer nurses was "adaptability," reflecting the complexity of contemporary cancer care and reaffirming Benner's definition of an expert nurse as one who can fluidly connect knowledge and experience to unfamiliar practice contexts. IMPLICATIONS FOR PRACTICE: Understanding characteristics of expert cancer nurses may help inform and support professional practice advancement and guide future research about select characteristics of expert cancer nurses to patient- and system-level outcomes.

Exploring the Experiences of People Treated With Immunotherapies for Advanced Melanoma and Those Caring for Them: "Real-World" Data.

BACKGROUND: Recent advances in the development of immunotherapy drugs have resulted in durable responses and improved overall survival for a proportion of patients with advanced melanoma; however, toxicities can be potentially life-threatening. The patients' family and friends (carers) are relied upon to support patients at home post treatment; however, we know little about their experiences. OBJECTIVES: This study aimed to understand the experiences of patients with advanced melanoma who received immunotherapy and their carers; and to explore the impact of immunotherapy treatment on patients' and carers' quality of life (QoL). METHODS: A cross-sectional, exploratory design was employed. Semi-structured interviews were conducted with patients: diagnosed with stage IV melanoma, attending an Australian public cancer hospital, had completed or were receiving treatment with immunotherapies; and the people caring for them at home. RESULTS: Patients (n = 22) described how immunotherapy impacted emotional health, functional ability; and had damaging economic consequences. Fatigue was reported consistently as having a considerable negative influence across all domains of QoL. Carers (n = 9) were anxious about their ability to correctly identify, report and manage side effects at home. CONCLUSIONS: Results demonstrate how immunotherapy can impact the QoL of both patients and carers, either directly through toxicities or indirectly through mechanisms such as stress, financial toxicity, or fatigue that limits participation in life activities. IMPLICATIONS FOR PRACTICE: Supportive care resources and interventions are needed for those receiving immunotherapy to minimise negative impacts on QoL. Carers likewise require better preparation and information to assist in identifying potential treatment toxicities and ensure patient safety.

Outcomes of a randomized controlled trial assessing a smartphone Application to reduce unmet needs among people diagnosed with CancEr (ACE).

BACKGROUND: Smartphone technology represents an opportunity to deliver practical solutions for people affected by cancer at a scale that was previously unimaginable, such as information, appointment monitoring, and improved access to cancer support services. This study aimed to determine whether a smartphone application (app) reduced the unmet needs among people newly diagnosed with cancer. METHODS: A single blind, multisite randomized controlled trial to determine the impact of an app-based, 4-month intervention. Newly diagnosed cancer patients were approached at three health service treatment clinics. RESULTS: Eighty-two people were randomized (intervention; n = 43 and control; n = 39), average age was 59.5 years (SD: 12.9); 71% female; 67% married or in a de facto relationship. At baseline, there were no differences in participants' characteristics between the groups. No significant effects, in reducing unmet needs, were demonstrated at the end of intervention (4-month) or 12-month follow-up. Overall, 94% used the app in weeks 1-4, which decreased to 41% in weeks 13-16. Mean app use time per participant: Cancer Information, 6.9 (SD: 18.9) minutes; Appointment Schedule, 5.1 (SD: 9.6) minutes; Cancer Services 1.5 minutes (SD: 6.8); Hospital Navigation, 1.4 (SD: 2.8) minutes. CONCLUSIONS: Despite consumer involvement in the design of this smartphone technology, the app did not reduce unmet needs. This may have been due to the study being underpowered. To contribute to a meaningful understanding and improved implementation of smartphone technology to support people affected by cancer, practical considerations, such as recruitment issues and access to, and confidence with, apps, need to be considered. Australian New Zealand Clinical Trials Registration (ACTRN) Trial Registration: 12616001251415; WEF 7/9/2016.

Socio-demographic and disease related characteristics associated with unplanned emergency department visits by cancer patients: a retrospective cohort study.

BACKGROUND: Emergency department (ED) presentations made by patients having cancer treatment are associated with worth outcomes. This study aimed to explore the socio-demographic and disease related characteristics associated with ED presentation, frequent ED presentations, and place of discharge for cancer patients receiving systemic cancer therapies in the ambulatory setting. METHODS: This was a single site, retrospective observational cohort design. Hospital data for patients treated in the Day Oncology Unit of a large public tertiary hospital in Melbourne, Australia between December 2014 and November 2017 were extracted from clinical databases and retrospectively matched to ED attendance records. Andersen's Behavioral Model of Health Service Utilisation provided the conceptual framework for exploring associations between socio-demographic and disease characteristics and ED use. RESULTS: A total of 2638 individuals were treated in the Day Oncology Unit over the study dates. Of these, 1182 (45%) made an unplanned ED presentation within 28 days of receiving systemic cancer therapy. One hundred and twenty-two (12%) patients attended the ED on two or more occasions within 28 days; while 112 (10%) patients attended the ED four or more times (within 28 days of receiving systemic cancer therapy) within any given 12 month period. Being born outside of Australia was independently related to making an unplanned ED presentation within 28 days of receiving anti-cancer therapy (p < .01) as was being diagnosed with head and neck (p = .03), upper gastrointestinal (p < .001), colorectal (p < .001), lung (p < .001), skin (p < .001) or breast cancer (p = .01). CONCLUSIONS: This study identified a subgroup of cancer patients for whom an ED presentation is more likely. Better understanding of socio-demographic and disease related characteristics associated with the risk of an ED presentation may help inform targeted follow up of patients, to mitigate potentially avoidable ED presentation and optimize outcomes of care.

Multidisciplinary home-based rehabilitation in inoperable lung cancer: a randomised controlled trial.

BACKGROUND: Lung cancer is associated with poor health-related quality of life (HRQoL) and high symptom burden. This trial aimed to assess the efficacy of home-based rehabilitation versus usual care in inoperable lung cancer. METHODS: A parallel-group, assessor-blinded, allocation-concealed, randomised controlled trial. Eligible participants were allocated (1:1) to usual care (UC) plus 8 weeks of aerobic and resistance exercise with behaviour change strategies and symptom support (intervention group (IG)) or UC alone. Assessments occurred at baseline, 9 weeks and 6 months. The primary outcome, change in between-group 6 min walk distance (6MWD), was analysed using intention-to-treat (ITT). Subsequent analyses involved modified ITT (mITT) and included participants with at least one follow-up outcome measure. Secondary outcomes included HRQoL and symptoms. RESULTS: Ninety-two participants were recruited. Characteristics of participants (UC=47, IG=45): mean (SD) age 64 (12) years; men 55%; disease stage n (%) III=35 (38) and IV=48 (52); radical treatment 46%. There were no significant between-group differences for the 6MWD (n=92) at 9 weeks (p=0.308) or 6 months (p=0.979). The mITT analyses of 6MWD between-group differences were again non-significant (mean difference (95% CI): 9 weeks: -25.4 m (-64.0 to 13.3), p=0.198 and 6 months: 41.3 m (-26.7 to 109.4), p=0.232). Significant 6-month differences, favouring the IG, were found for HRQoL (Functional Assessment of Cancer Therapy-Lung: 13.0 (3.9 to 22.1), p=0.005) and symptom severity (MD Anderson Symptom Inventory-Lung Cancer: -2.2 (-3.6 to -0.9), p=0.001). CONCLUSIONS: Home-based rehabilitation did not improve functional exercise capacity but there were improvements in patient-reported exploratory secondary outcomes measures observed at 6 months. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ACTRN12614001268639).

Uncertainty and sense-of-self as targets for intervention for cancer-related fatigue.

Cancer-related fatigue (CRF) can be a devastating consequence of cancer and cancer treatments, negatively impacting 50%-90% of cancer patients regardless of age, sex or diagnosis. Limited evidence and research exist to inform effective patient-centred interventions. To target symptom management, there must first be a broader understanding of the symptoms and the lived experience of the persons experiencing CRF and those caring for them, from a supportive as well as a healthcare perspective. This study set out to consider whether components of the language used or descriptors reported by patients, family members, and/or healthcare professionals may provide new insights for potential targets for intervention development. Descriptors from 84 responses (n = 84) from cancer survivors, family members and healthcare professionals were analysed for content. The descriptors reiterate the physical, emotional and functional consequences of CRF, but also reflect two new potential targets for intervention to mitigate the impacts of CRF: uncertainty and sense-of-self.

The trajectory of patients who die from metastatic prostate cancer: a population-based study.

OBJECTIVES: To describe health service use, symptom and survival characteristics in metastatic prostate cancer (mPCa) in order to outline usual care practices and identify future opportunities to improve the quality of care in this patient group. PATIENTS AND METHODS: This population cohort study, conducted in Victoria, Australia, used 10 years (2000-2010) of linked hospital discharge, emergency visit, and death registration data, to track patients from their first inpatient admission with mPCa until death. Descriptive statistics on inpatient health service use, symptoms, procedures, survival, and place of death are presented. RESULTS: In all, 4436 patients survived a median (interquartile range [IQR]) of 4 (1, 12) months from their first multiday admission with mPCa. They had a median (IQR) of 3 (1, 9) admissions, 1 (0, 2) emergency department presentation, and 35 (18, 63) days admitted to hospital. Lower urinary tract symptoms were common (50%), and 21% underwent lower urinary tract procedures, whilst 48% had blood product transfusions. In the last month of life, 3685 (83%) had at least one indicator of aggressive end-of-life care, including 48% with more than one acute hospital admission, and 55% staying ≥14 days. Hospital-based palliative care was accessed by 2657 (60%), occurring a median (IQR) of 30 (11, 74) days before death. In all, 23% died in the community, whilst 77% died in hospital, of whom 55% died in an acute hospital bed. CONCLUSION: Half of all decedents first admitted for a multiday stay with mPCa survived <4 months thereafter. They had a marked symptom burden, underwent multiple procedures and had multiple admissions. In all, 40% of patients did not receive any hospital-based palliative care. Several opportunities exist to improve the timely transition to palliative care services with mPCa. These data form a benchmark against which future improvements to palliative care integration may be measured.

Identifying essential information to support patient decision-making regarding participation in cancer clinical trials: A Delphi study.

PURPOSES: This research set out to contribute to ongoing efforts to improve the quality of informed consent information provided to patients by specifically focusing on establishing consensus with regard to essential information to enhance the informed consent process. DESIGN AND METHODS: A Delphi consensus method was used to conduct three rounds of online surveys. Five groups of experts directly or indirectly involved in the informed consent process were invited to participate: patients, family members/friends, physicians, other health professionals and other key informants, including ethicists, contract research staff and pharmaceutical company staff. FINDINGS: Of 156 eligible participants, 101 participants (64.7%) completed all three rounds. In round 1, 994 information items were reported and generated into 74 statements. These were grouped under eight headings essential to the informed consent process. In rounds 2 and 3, the list was reduced to 15 statements representing consensus on essential information to be included in a summarised patient information document to support decision-making regarding trial participation. Risks and discomforts, participation requirements and trial governance were identified as important considerations. CONCLUSIONS: The 15 essential statements identified in this study could be used as components of a summarised information sheet given to potential cancer clinical trial participants, as an adjunct to the informed consent process. A robust evaluation of the impact of these statements on the quality of the informed consent process is needed.

Development of a hospital-based patient-reported outcome framework for lung cancer patients: a study protocol.

BACKGROUND: Patient-reported outcome (PRO) data is central to the delivery of quality health care. Establishing sustainable, reliable and cost-efficient methods for routine collection and integration of PRO data into health information systems is challenging. This protocol paper describes the design and structure of a study to develop and pilot test a PRO framework to systematically and longitudinally collect PRO data from a cohort of lung cancer patients at a comprehensive cancer centre in Australia. METHODS: Best-practice guidelines for developing registries aimed at collecting PROs informed the development of this PRO framework. Framework components included: achieving consensus on determining the purpose of the framework, the PRO measures to be included, the data collection time points and collection methods (electronic and paper), establishing processes to safeguard the quality of the data collected and to link the PRO framework to an existing hospital-based lung cancer clinical registry. Lung cancer patients will be invited to give feedback on the PRO measures (PROMs) chosen and the data collection time points and methods. Implementation of the framework will be piloted for 12 months. Then a mixed-methods approach used to explore patient and multidisciplinary perspectives on the feasibility of implementing the framework and linking it to the lung cancer clinical registry, its clinical utility, perceptions of data collection burden, and preliminary assessment of resource costs to integrate, implement and sustain the PRO framework. The PRO data set will include: a quality of life questionnaire (EORTC-QLQ-C30) and the EORTC lung cancer specific module (QLQC-LC-13). These will be collected pre-treatment (baseline), 2, 6 and 12 months post-baseline. Also, four social isolation questions (PROMIS) will be collected at baseline. DISCUSSION: Identifying and deciding on the overall purpose, clinical utility of data and which PROs to collect from patients requires careful consideration. Our study will explore how PRO data collection processes that link to a clinical data set can be developed and integrated; how PRO systems that are easy for patients to complete and professionals to use in practice can be achieved, and will provide indicative costs of developing and integrating a longitudinal PRO framework into routine hospital data collection systems. TRIAL REGISTRATION: This study is not a clinical trial and is therefore not registered in any trial registry. However, it has received human research ethics approval (LNR/16/PMCC/45).

Study protocol for Enhancing Parenting In Cancer (EPIC): development and evaluation of a brief psycho-educational intervention to support parents with cancer who have young children.

BACKGROUND: Parents with cancer have high rates of psychological morbidity, and their children are at risk of poor psychosocial outcomes, particularly in the context of parental distress and poor family communication. Parents express concerns about the impact of cancer on their children and report a lack of professional guidance in meeting their children's needs. Few parenting interventions exist and current interventions have extensive infrastructure demands making them unsuitable for routine use in most health settings. The aims of this study are to develop and establish the feasibility and acceptability of a novel and accessible psycho-educational intervention to improve parenting efficacy and decrease parental stress among adults with cancer who have children aged 3-12 years. The intervention will be suitable for parents with cancer who are receiving treatment with a view to longer term survival, irrespective of cancer diagnosis, and their respective co-parents. METHODS/DESIGN: This study comprises two phases using the UK Medical Research Council framework for developing complex interventions. In the development phase, intervention content will be iteratively developed and evaluated in consultation with consumers, and in the piloting phase, feasibility will be tested in a clinical sample of 20 parents with cancer and their co-parents using a single arm, pre-test post-test design. The intervention will comprise an audiovisual resource (DVD), a question prompt list, and a telephone call with a clinical psychologist. Questionnaires administered pre- and 1 month post-intervention will assess parental stress, psychological morbidity, quality of life, self-efficacy and perceptions of child adjustment, and family functioning. Intervention feasibility will be determined by mixed-method participant evaluation of perceived usefulness, benefits, and acceptability. DISCUSSION: This new initiative will translate existing descriptive evidence into an accessible intervention that supports parenting during cancer treatment and meets the information needs of parents with cancer and their families. This is an important advance: despite increasing recognition of the impact of parental cancer on the family, intervention research lags behind the descriptive literature. This low-intensity, accessible, and targeted intervention places minimal burden on infrastructure and promotes patient autonomy and self-management. If feasible, this style of intervention may be a template for future interventions with similar populations.

Benefits of home-based multidisciplinary exercise and supportive care in inoperable non-small cell lung cancer - protocol for a phase II randomised controlled trial.

BACKGROUND: Lung cancer is one of the most commonly diagnosed cancers, and is a leading cause of cancer mortality world-wide. Due to lack of early specific symptoms, the majority of patients present with advanced, inoperable disease and five-year relative survival across all stages of non-small cell lung cancer (NSCLC) is 14%. People with lung cancer also report higher levels of symptom distress than those with other forms of cancer. Several benefits for survival and patient reported outcomes are reported from physical activity and exercise in other tumour groups. We report the protocol for a study investigating the benefits of exercise, behaviour change and symptom self-management for patients with recently diagnosed, inoperable, NSCLC. METHODS: This multi-site, parallel-group, assessor-blinded randomised controlled trial, powered for superiority, aims to assess functional and patient-reported outcomes of a multi-disciplinary, home-based exercise and supportive care program for people commencing treatment. Ninety-two participants are being recruited from three tertiary-care hospitals in Melbourne, Australia. Following baseline testing, participants are randomised using concealed allocation, to receive either: a) 8 weeks of home-based exercise (comprising an individualised endurance and resistance exercise program and behaviour change coaching) and nurse-delivered symptom self-management intervention or b) usual care. The primary outcome is the between-group difference in the change in functional exercise capacity (six-minute walk distance) from baseline to post-program assessment. Secondary outcomes include: objective and self-reported physical activity levels, physical activity self-efficacy, behavioural regulation of motivation to exercise and resilience, muscle strength (quadriceps and grip), health-related quality of life, anxiety and depression and symptom interference. DISCUSSION: There is a lack of evidence regarding the benefit of exercise intervention for people with NSCLC, particularly in those with inoperable disease receiving treatment. This trial will contribute to evidence currently being generated in national and international trials by implementing and evaluating a home-based program including three components not yet combined in previous research, for people with inoperable NSCLC receiving active treatment and involving longer-term follow-up of outcomes. This trial is ongoing and currently recruiting. TRIAL REGISTRATION: This trial was prospectively registered on the Australian New Zealand Clinical Trials Registry ( ACTRN12614001268639 : (4/12/14).

Patient-reported outcomes in cancer survivors: a population-wide cross-sectional study.

PURPOSE: There is a lack of robust population-based data regarding the lived experience of cancer survivors. This study assessed the quality of life (QoL) of survivors of breast, colorectal, or prostate cancer, non-Hodgkin lymphoma or melanoma 1, 3 and 5 years post-diagnosis. Associations between various demographic and disease-related factors and QoL were assessed. METHODS: A cross-sectional postal survey was undertaken. Eligible participants were identified from a population-based cancer registry. Patient-reported outcomes including QoL, symptom issues and information needs were collected using validated questionnaires. RESULTS: Difficulties with all QoL domains were more prevalent amongst cancer survivors compared with the general population, particularly difficulties with usual activities (28 vs 15%) and anxiety or depression (35 vs 22%). Symptoms such as trouble sleeping, always feeling tired, trouble concentrating and fear of cancer recurrence persisted up to 5 years post-diagnosis. Factors associated with reduced QoL included having another long-standing health condition, cancer not responding fully to treatment, not having or not being certain of having a written care plan and being female. CONCLUSIONS: Cancer survivors experience inferior QoL and cancer-related symptoms for years following diagnosis. These results support further investigation into factors that contribute to poorer survivor outcomes and enhanced identification and intervention strategies for those requiring additional support.

The Women's wellness after cancer program: a multisite, single-blinded, randomised controlled trial protocol.

BACKGROUND: Despite advances in cancer diagnosis and treatment have significantly improved survival rates, patients post-treatment-related health needs are often not adequately addressed by current health services. The aim of the Women's Wellness after Cancer Program (WWACP), which is a digitised multimodal lifestyle intervention, is to enhance health-related quality of life in women previously treated for blood, breast and gynaecological cancers. METHODS: A single-blinded, multi-centre randomized controlled trial recruited a total of 351 women within 24 months of completion of chemotherapy (primary or adjuvant) and/or radiotherapy. Women were randomly assigned to either usual care or intervention using computer-generated permuted-block randomisation. The intervention comprises an evidence-based interactive iBook and journal, web interface, and virtual health consultations by an experienced cancer nurse trained in the delivery of the WWACP. The 12 week intervention focuses on evidence-based health education and health promotion after a cancer diagnosis. Components are drawn from the American Cancer Research Institute and the World Cancer Research Fund Guidelines (2010), incorporating promotion of physical activity, good diet, smoking cessation, reduction of alcohol intake, plus strategies for sleep and stress management. The program is based on Bandura's social cognitive theoretical framework. The primary outcome is health-related quality of life, as measured by the Functional Assessment of Cancer Therapy-General (FACT-G). Secondary outcomes are menopausal symptoms as assessed by Greene Climacteric Scale; physical activity elicited with the Physical Activity Questionnaire Short Form (IPAQ-SF); sleep measured by the Pittsburgh Sleep Quality Index; habitual dietary intake monitored with the Food Frequency Questionnaire (FFQ); alcohol intake and tobacco use measured by the Australian Health Survey and anthropometric measures including height, weight and waist-to-hip ratio. All participants were assessed with these measures at baseline (at the start of the intervention), 12 weeks (at completion of the intervention), and 24 weeks (to determine the level of sustained behaviour change). Further, a simultaneous cost-effectiveness evaluation will consider if the WWACP provides value for money and will be reported separately. DISCUSSION: Women treated for blood, breast and gynaecological cancers demonstrate increasingly good survival rates. However, they experience residual health problems that are potentially modifiable through behavioural lifestyle interventions such as the WWACP. TRIAL REGISTRATION: The protocol for this study was registered with the Australian and New Zealand Clinical Trials Registry, Trial ID: ACTRN12614000800628 , July 28, 2014.