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Sexuality and sexual intimacy are important aspects of cancer survivorship. In head and neck cancer (HNC), concerns around sexual health, sexuality and sexual intimacy are infrequently raised or addressed in standard HNC consultations, either before embarking on treatment or during survivorship. The changing demographic of HNC patients, largely due to the increasing proportion of patients with human papillomavirus-associated oropharyngeal squamous cell carcinoma (HPVOPSCC), has driven renewed interest in some specific survivorship issues, including sexual behaviours and lifestyles, which may account for both the primary mode of HPV transmission and the younger and less comorbid population affected by this disease. While HNC survivors may have many complex needs in the short and longer term, some patients may prioritise preserving sexual function above other more HNC-specific issues, such as swallowing and xerostomia. Beyond HPVOPSCC, there is evidence to suggest that impairment of sexual health is a pervasive survivorship issue across all HNC cancer types, and this narrative review article highlights publications reporting quantitative assessments of sexual health outcomes in HNC patients. There are also limited studies evaluating whether current sexual health models of care are adequate for HNC patients or whether new or adapted models are needed. Future research will also need to define the impact of our treatments on the sexuality and sexual intimacy concerns of specific HNC cohorts with more granularity to enhance pre- and post-treatment counselling.
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Neoplasias de Cabeça e Pescoço , Saúde Sexual , Sexualidade , Humanos , Neoplasias de Cabeça e Pescoço/psicologia , Neoplasias de Cabeça e Pescoço/complicações , Sexualidade/psicologia , Comportamento Sexual/psicologia , Masculino , FemininoRESUMO
BACKGROUND: Lack of agreed terminology and definitions in healthcare compromises communication, patient safety, optimal management of adverse events, and research progress. The purpose of this scoping review was to understand the terminologies used to describe central venous access devices (CVADs), associated complications and reasons for premature removal in people undergoing cancer treatment. It also sought to identify the definitional sources for complications and premature removal reasons. The objective was to map language and descriptions used and to explore opportunities for standardisation. METHODS: A systematic search of MedLine, PubMed, Cochrane, CINAHL Complete and Embase databases was performed. Eligibility criteria included, but were not limited to, adult patients with cancer, and studies published between 2017 and 2022. Articles were screened and data extracted in Covidence. Data charting included study characteristics and detailed information on CVADs including terminologies and definitional sources for complications and premature removal reasons. Descriptive statistics, tables and bar graphs were used to summarise charted data. RESULTS: From a total of 2363 potentially eligible studies, 292 were included in the review. Most were observational studies (n = 174/60%). A total of 213 unique descriptors were used to refer to CVADs, with all reasons for premature CVAD removal defined in 84 (44%) of the 193 studies only, and complications defined in 56 (57%) of the 292 studies. Where available, definitions were author-derived and/or from national resources and/or other published studies. CONCLUSION: Substantial variation in CVAD terminology and a lack of standard definitions for associated complications and premature removal reasons was identified. This scoping review demonstrates the need to standardise CVAD nomenclature to enhance communication between healthcare professionals as patients undergoing cancer treatment transition between acute and long-term care, to enhance patient safety and rigor of research protocols, and improve the capacity for data sharing.
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Neoplasias , Terminologia como Assunto , Humanos , Cateterismo Venoso Central/efeitos adversos , Cateterismo Venoso Central/métodos , Cateteres Venosos Centrais/efeitos adversos , Remoção de Dispositivo , Oncologia/métodosRESUMO
INTRODUCTION: Cancer-related cognitive impairment is common among people diagnosed with and treated for cancer. This can be a distressing and disabling side effect for impacted individuals. Interventions to mitigate cognitive dysfunction are available, but, to date, most have been trialled in samples that are largely or exclusively composed of people with solid tumours. Intervention strategies to support cognitive functioning are needed, but there is a paucity of research in this area. The main aim of this study is to test the feasibility and acceptability of methods and procedures intended for use in a definitive trial of a web-based cognitive rehabilitation programme, Responding to Cognitive Concerns (eReCog), in people who have received chemotherapy for aggressive lymphoma. METHODS AND ANALYSIS: The proposed study is a single-site, parallel-group, pilot randomised controlled trial, with one baseline and one follow-up (or postintervention) assessment. 38 people from the target population with low perceived cognitive function based on the Cognitive Change Screen will be recruited from a specialist cancer centre between July 2023 and June 2024. After baseline assessment, participants will be randomised one-to-one to receive usual care only (a factsheet about changes in memory and thinking for people with cancer) or eReCog plus usual care. The 4-week eReCog intervention consists of four online modules offering psychoeducation on cognitive impairment associated with cancer and its treatment, skills training for improving memory, and attention and relaxation training. Study outcomes will include the feasibility of recruitment and retention at follow-up assessment (primary outcomes), as well as adherence to, usability of and intrinsic motivation to engage with eReCog, and compliance with study measures. The potential efficacy of eReCog will also be evaluated. ETHICS AND DISSEMINATION: Ethical approval was granted by the Peter MacCallum Cancer Centre Human Research Ethics Committee in Victoria, Australia (HREC/97384/PMCC). Study findings will be disseminated via peer-reviewed publications and conference presentations. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry, ACTRN12623000705684.
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Comprometimento Cognitivo Relacionado à Quimioterapia , Intervenção Baseada em Internet , Linfoma , Humanos , Comprometimento Cognitivo Relacionado à Quimioterapia/reabilitação , Terapia Cognitivo-Comportamental/métodos , Treino Cognitivo , Estudos de Viabilidade , Internet , Linfoma/complicações , Linfoma/reabilitação , Projetos Piloto , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
BACKGROUND: High quality supportive care is fundamental to achieve optimal health outcomes for people affected by cancer. Use of quality indicators provides comparative information for monitoring, management, and improvement of care within and across healthcare systems. The aim of this Australian study was to develop and test a minimum viable set of cancer supportive care quality indicators that would be feasible to implement and generate usable data for policy and practice. METHODS: A two-round, modified reactive Delphi process was employed firstto develop the proposed indicators. Participants with expertise in cancer control in Australia, the United Kingdom, and Canada rated their level of agreement on a 7-point Likert scale against criteria assessing the importance, feasibility, and usability of proposed indicators. Relative response frequencies were assessed against pre-specified consensus criteria and a ranking exercise, which delivered the list of proposed indicators. Draft indicators were then presented to a purposive sample of clinicial and health management staff via qualitative interviews at two acute care settings in Melbourne, Australia for feedback regarding feasibility. Desktop audits of online published health service policy and practice descriptions were also conducted at participating acute care settings to confirm health service data availability and feasibility of collection to report against proposed indicators. RESULTS: Sixteen quality indicators associated with the delivery of quality cancer supportive care in Australian acute healthcare settings met pre-specified criteria for inclusion. Indicators deemed 'necessary' were mapped and ranked across five key categories: Screening, Referrals, Data Management, Communication and Training, and Culturally Safe and Accessible Care. Testing confirmed indicators were viewed as feasible by clinical and health management staff, and desktop audits could provide a fast and reasonably effective method to assess general adherence and performance. CONCLUSIONS: The development of quality indicators specific to cancer supportive care provides a strong framework for measurement and monitoring, service improvement, and practice change with the potential to improve health outcomes for people affected by cancer. Evaluation of implementation feasibility of these expert consensus generated quality indicators is recommended.
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Neoplasias , Indicadores de Qualidade em Assistência à Saúde , Humanos , Consenso , Técnica Delphi , Austrália , Neoplasias/terapiaRESUMO
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.
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Transtornos Cognitivos , Disfunção Cognitiva , Linfoma , Neoplasias , Humanos , Transtornos Cognitivos/psicologia , Disfunção Cognitiva/epidemiologia , Disfunção Cognitiva/etiologia , Cognição , Linfoma/complicações , Testes NeuropsicológicosRESUMO
BACKGROUND: Consumer involvement is considered an essential component of contemporary cancer research, with a movement towards participatory methods, to the benefit of consumers and researchers. Overall, in-depth research on participant experiences and perceptions of their co-designer role-and how these may (or may not) change during a co-design project-is limited. The purpose of this paper was to synthesise the reflective accounts of consumers, project staff, and a researcher who partnered on a project to develop a personalised care plan template, with the aim of generating guidance for others looking to partner with consumers in health and medical research. Here, our team of researchers, project staff, and consumers reflect on the experience of working together using Gibbs' Reflective Cycle, which was completed by team members with responses then undergoing inductive data analysis. RESULTS: Reflections are categorised under three core themes: (1) setting up the group and building relationships (2) measuring the value of consumer involvement, and (3) potential challenges for consumer involvement. Through reflection on our experiences of co-design, our team developed and identified practical strategies that contributed to the success of our partnership. These include setting expectations as a group; having experienced consumers on the team; having regular, pre-scheduled meetings that run to time; and working to overcome challenges identified by the group such as power imbalances, time commitment, and lack of diversity. CONCLUSION: These practical reflections on creating a safe and supportive environment in which genuine consumer involvement can take place could inform other institutions and researchers looking to work meaningfully with consumers in research.
Consumer involvement in cancer research can inform the initial setting of research priorities, and then the design and conduct of research, with a view to optimising research impact. As part of a project to develop a personalised care plan for patients with newly diagnosed rectal cancer, our team of medical oncologists and project staff partnered with a group of consumers from project initiation. Here, we reflect on our experiences, including the benefits and challenges associated with consumer involvement. Positive aspects of the partnership between consumers, project staff, and the researcher included the establishment of a cohesive team, which substantially improved the study design, conduct, and study outcomes. This experience increased the enthusiasm of the project staff and researcher for consumer engagement in future research. Things that negatively impacted the team included the loss of consumers due to cancer-related health issues. A lack of diversity in the consumer group was recognised as a limitation of the breadth of the consumer voice throughout the project. Upon reflection, there were many important learnings regarding meeting preparation, structure, and team culture that we discuss here, looking to provide practical guidance on optimising consumer involvement.
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PURPOSE: The primary objectives were to describe the longitudinal course of sexual health in people undergoing curative (chemo)radiation therapy ([C)RT) for human papillomavirus-associated oropharyngeal squamous cell carcinoma (HPVOPSCC) and identify factors associated with higher sexual satisfaction 12 months after (C)RT. METHODS AND MATERIALS: Eligible participants from 3 sites were recruited to a prospective observational study between October 2020 and November 2021. Measures of sexual health (22-item European Organization for Research and Treatment of Cancer Sexual Health Questionnaire), treatment outcome priorities (Chicago Priorities Scale), quality of life (30-item European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire), symptom burden (MD Anderson Symptom Inventory-Head and Neck), emotional distress (Patient-Reported Outcomes Measurement Information System - Anxiety and Depression), and facial appearance and appearance distress (FACE-Q) were administered before, at the end, and 3 and 12 months after (C)RT. RESULTS: Of 128 eligible participants, 100 were recruited; sexual health measure data were available for 89 of 98 patients alive at 12 months. Mean sexual satisfaction scores were 51.8 (SD = 26.6) before (C)RT. Mixed model results indicated a clinically significant reduction in sexual satisfaction by the end of (-25.4; 95% CI, -30.7 to -20.2) and 3 months after CRT (-12.2; -17.3 to -7.0) but not 12 months after CRT (-3.8; 95% CI, -9.0 to 1.4). Of 13 treatment outcome priorities, "keeping sexual function" had a median rank of 10 and 9 before and 12 months after (C)RT, respectively; 24% and 26% identified it as a top priority at these times. Cohabiting, having a sexual partner, being sexually active, higher global health status, lower sexual health issues, lower depression, and considering sexual function a top priority were associated with higher sexual satisfaction scores 12 months after (C)RT. CONCLUSIONS: Although affected acutely by (C)RT, average sexual satisfaction returned to near pretreatment levels after 12 months. Sexual function is considered a top survivorship priority by approximately one-quarter of patients with HPVOPSCC.
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Neoplasias de Cabeça e Pescoço , Neoplasias Orofaríngeas , Humanos , Estudos Longitudinais , Papillomavirus Humano , Qualidade de Vida , Neoplasias Orofaríngeas/terapia , Resultado do Tratamento , Carcinoma de Células Escamosas de Cabeça e PescoçoRESUMO
BACKGROUND: Disparities in cancer incidence, complex care needs, and poor health outcomes are largely driven by structural inequities stemming from social determinants of health. To date, no evidence-based clinical tool has been developed to identify newly diagnosed patients at risk of poorer outcomes. Specialist cancer nurses are well-positioned to ameliorate inequity of opportunity for optimal care, treatment, and outcomes through timely screening, assessment, and intervention. We designed a nursing complexity checklist (the "Checklist") to support these activities, with the ultimate goal of improving equitable experiences and outcomes of care. This study aims to generate evidence regarding the clinical utility of the Checklist. OBJECTIVE: The primary objectives of this study are to provide qualitative evidence regarding key aspects of the Checklist's clinical utility (appropriateness, acceptability, and practicability), informed by Smart's multidimensional model of clinical utility. Secondary objectives explore the predictive value of the Checklist and concordance between specific checklist items and patient-reported outcome measures. METHODS: This prospective mixed methods case series study will recruit up to 60 newly diagnosed patients with cancer and 10 specialist nurses from a specialist cancer center. Nurses will complete the Checklist with patient participants. Within 2 weeks of Checklist completion, patients will complete 5 patient-reported outcome measures with established psychometric properties that correspond to specific checklist items and an individual semistructured interview to explore Checklist clinical utility. Interviews with nurses will occur 12 and 24 weeks after they first complete a checklist, exploring perceptions of the Checklist's clinical utility including barriers and facilitators to implementation. Data describing planned and unplanned patient service use will be collected from patient follow-up interviews at 12 weeks and the electronic medical record at 24 weeks after Checklist completion. Descriptive statistics will summarize operational, checklist, and electronic medical record data. The predictive value of the Checklist and the relationship between specific checklist items and relevant patient-reported outcome measures will be examined using descriptive statistics, contingency tables, measures of association, and plots as appropriate. Qualitative data will be analyzed using a content analysis approach. RESULTS: This study was approved by the institution's ethics committee. The enrollment period commenced in May 2022 and ended in November 2022. In total, 37 patients with cancer and 7 specialist cancer nurses were recruited at this time. Data collection is scheduled for completion at the end of May 2023. CONCLUSIONS: This study will evaluate key clinical utility dimensions of a nursing complexity checklist. It will also provide preliminary evidence on its predictive value and information to support its seamless implementation into everyday practice including, but not limited to, possible revisions to the Checklist, instructions, and training for relevant personnel. Future implementation of this Checklist may improve equity of opportunity of access to care for patients with cancer. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/48432.
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OBJECTIVES: To identify changes in the healthcare preferences, patient experiences, and quality of life of patients with NETs at 6-month follow-up, informing the design of supportive care services. METHODS: This study presents 6-month follow-up data of a mixed-methods multi-site study. Demographic, clinical, and patient-reported outcome questionnaire data was collected. RESULTS: High percentages of suboptimal experiences of care were reported. Patients reported less positive experiences with being involved in decisions about their care and treatment; their family or someone close to them having the opportunity to talk to their cancer doctor, or having their family or someone close to them receive all the information they need to help care for them at home. Patients also reported negative experiences for on the information about their cancer accessible online and the usefulness of the information they accessed. Differences between baseline and follow-up scores were mostly not significant apart from anxiety and sleep disturbance scales, CONCLUSIONS: Patients with NETs report difficulties in accessing and understanding written information that is persistent over time. PRACTICE IMPLICATIONS: Outcomes will inform the design and development of an informational resource aimed at facilitating improved understanding for patients with NETs.
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Tumores Neuroendócrinos , Humanos , Qualidade de Vida , Ansiedade/etiologia , Transtornos de Ansiedade , Medidas de Resultados Relatados pelo PacienteAssuntos
Gastos em Saúde , Neoplasias , Humanos , Revelação , Neoplasias/terapia , Efeitos Psicossociais da DoençaRESUMO
Background: Advance care planning (ACP) centres on supporting people to define and discuss their individual goals and preferences for future medical care, and to record and review these as appropriate. Despite recommendations from guidelines, rates of documentation for people with cancer are considerably low. Aim: To systematically clarify and consolidate the evidence base of ACP in cancer care by exploring how it is defined; identifying benefits, and known barriers and enablers across patient, clinical and healthcare services levels; as well as interventions that improve advance care planning and are their effectiveness. Methods: A systematic overview of reviews was conducted and was prospectively registered on PROSPERO. PubMed, Medline, PsycInfo, CINAHL, and EMBASE were searched for review related to ACP in cancer. Content analysis and narrative synthesis were used for data analysis. The Theoretical Domains Framework (TDF) was used to code barriers and enablers of ACP as well as the implied barriers targeted by each of the interventions. Results: Eighteen reviews met the inclusion criteria. Definitions were inconsistent across reviews that defined ACP (n=16). Proposed benefits identified in 15/18 reviews were rarely empirically supported. Interventions reported in seven reviews tended to target the patient, even though more barriers were associated with healthcare providers (n=40 versus n=60, respectively). Conclusion: To improve ACP uptake in oncology settings; the definition should include key categories that clarify the utility and benefits. Interventions need to target healthcare providers and empirically identified barriers to be most effective in improving uptake. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?, identifier CRD42021288825.
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Knowledge of factors associated with superior outcomes in women treated with urethral bulking agents for stress urinary incontinence (SUI) remains limited. The aim of this study was to examine associations between post-treatment outcomes in women who had undergone polyacrylamide hydrogel injections for SUI, and physiological and self-reported variables captured during pre-treatment clinical evaluation. A cross-sectional study was undertaken in female patients treated for SUI with polyacrylamide hydrogel injections by a single urologist between January 2012 and December 2019. Post-treatment outcome data were gathered in July 2020 using the Patient Global Impression of Improvement (PGI-I), Urinary Distress Inventory-short form (UDI-6), Incontinence Impact Questionnaire (IIQ7), and International Consultation on Incontinence Questionnaire Short Form (ICIQ SF). All other data were gathered from women's medical records including pre-treatment patient-reported outcomes. Associations between post-treatment outcomes and pre-treatment physiological and self-reported variables were investigated using regression models. One hundred seven of the 123 eligible patients completed post-treatment patient-reported outcome measures. Mean age was 63.1 years (range 25-93 years), and median time between first injection and follow-up was 51 months (inter-quartile range 23.5-70 months). Fifty-five (51%) women had a successful outcome based on PGI-I scores. Women with type 3 urethral hypermobility pre-treatment were more likely to report treatment success (PGI-I). Poor bladder compliance pre-treatment was associated with greater urinary distress, frequency and severity (UDI-6 and ICIQ) post-treatment. Older age was associated with worse urinary frequency and severity (ICIQ) post-treatment. Associations between patient-reported outcomes and time between first injection and follow-up were trivial and not statistically significant. Severity of pre-treatment incontinence impact (IIQ-7) was associated with worse incontinence impact post-treatment. Type 3 urethral hypermobility was associated with a successful outcome, whereas pre-treatment incontinence impact, poor bladder compliance and older age were associated with poorer self-reported outcomes. Long-term efficacy appears to hold in those who responded to initial treatment.
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OBJECTIVE: Cancer supportive care comprises an integrative field of multidisciplinary services necessary for people affected by cancer to manage the impact of their disease and treatment and achieve optimal health outcomes. The concept of supportive care, largely driven by Margaret Fitch's seminal supportive care framework, was developed with the intent to provide health service planners with a conceptual platform to plan and deliver services. However, over time, this concept has been eroded, impacting implementation and practice of supportive care. This study therefore aimed to examine expert contemporary views of supportive care with the view to refocusing the definition and conceptual framework of cancer supportive care to enhance relevance to present-day cancer care. METHODS: A two-round online modified reactive Delphi survey was employed to achieve consensus regarding terminology to develop a contemporary conceptual framework. A listing of relevant cancer supportive care terms identified through a scoping review were presented for assessment by experts. Terms that achieved ≥ 75% expert agreement as 'necessary' were then assessed using Theory of Change (ToC) to develop consensus statements and a conceptual framework. RESULTS: A total of 55 experts in cancer control with experience in developing, advising on, delivering, or receiving supportive care in cancer took part in the Delphi surveys. Expert consensus assessed current terminology via Delphi round 1, with 124 terms deemed relevant and 'necessary' per pre-specified criteria. ToC was applied to consensus terms to develop three key statements of definition, and a comprehensive conceptual framework, which were presented for expert consensus review in Delphi round 2. CONCLUSION: Finalised definitions and conceptual framework are strongly aligned with relevant international policy and advocacy documents, and strengthen focus on early identification, timely intervention, multidisciplinary collaboration, and end-to-end, cross-sector, cancer supportive care.
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Neoplasias , Humanos , Técnica Delphi , Consenso , Neoplasias/terapia , Serviços de SaúdeRESUMO
BACKGROUND: Unmanaged consequences of cancer and its treatment are high among patients with lung cancer and their informal carers, resulting in avoidable healthcare use and financial burden. Provision of cancer supportive care addressing the impacts of cancer and its treatment has demonstrated efficacy in mitigating these consequences; however, globally, there is a lack of investment in these services. Paucity of robust economic evidence regarding benefit of cancer supportive care has limited policy impact and allocation of resources. This study therefore utilised a Social Return on Investment (SROI) methodology to conduct a forecast evaluation of lung cancer supportive care services, to ascertain potential social value and return on investment. METHODS: An SROI economic evaluation model was developed using qualitative stakeholder consultations synthesised with published evidence to develop the inputs, outcomes and financial value associated with the delivery of a hypothetical model of quality lung cancer supportive care services over a one and five year period. SROI ratios were generated to determine the social value and cost savings associated per every $1AUD invested in cancer supportive care for both the healthcare system and patients. Deadweight, drop off and attribution were calculated, and sensitivity analysis was performed to confirm the stability of the model. RESULTS: The value generated from modelled supportive care service investments in a one-year period resulted in an SROI ratio of 1:9; that is, for every dollar invested in supportive care, AUD$9.00 social return is obtained when savings to the healthcare system and benefits to the patients are combined. At five-years, these same investments resulted in greater cumulative value generated for both the patient and the healthcare system, with a SROI ratio of 1:11. CONCLUSION: Our study provides strong evidence for policy makers, clinicians and consumers to advocate for further investment in cancer supportive care, as demonstrated cost savings could be achieved through implementation of the proposed supportive care service model, with these accruing over a five-year period. The SROI model provides a comprehensive framework detailing supportive care services and the health workforce necessary to achieve value-based outcomes for patients and the healthcare system.
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Investimentos em Saúde , Neoplasias Pulmonares , Humanos , Análise Custo-Benefício , Neoplasias Pulmonares/terapia , Cuidadores , AustráliaRESUMO
OBJECTIVE: To better serve women with gynaecological cancers, we need a sound understanding of their health, wellbeing and needs. This study sought to explore these issues in a sample of Australian women before commencing curative radiotherapy. METHODS: We undertook a secondary analysis of baseline data from a supportive care trial (n = 311). Descriptive statistics were used to summarise responses to measures of wellbeing, general psychological distress, symptom distress, sexual function and vaginal changes, and supportive care needs. Pre-specified regression models were used to examine sources of variation in wellbeing and sexual function. RESULTS: Women reported lower emotional, functional and physical wellbeing than population norms (all p < 0.001). The prevalence of general psychological distress was 31% (95% CI 26-36%). Distress caused by physical symptoms was typically low. Health system and information needs comprised eight of the top ten moderate-to-high supportive care needs. Most women reported no change in interest for physical contact or sex compared to pre-diagnosis, but some sexually active women (16-24%) reported smaller vaginal size, increased dryness, and more pain on intercourse. General psychological distress was a robust marker of poorer wellbeing and sexual function. CONCLUSIONS: Before radiotherapy, a substantial minority of women with gynaecological cancers experience general psychological distress, reduced wellbeing and moderate-to-high health system and information needs. A model of comprehensive care incorporating assessment of unmet needs, general psychological distress, and sexual issues is recommended. Healthcare providers may require training to elicit and respond to a constellation of interrelated issues and access relevant services for women requiring additional support.
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Neoplasias dos Genitais Femininos , Angústia Psicológica , Austrália/epidemiologia , Feminino , Neoplasias dos Genitais Femininos/psicologia , Neoplasias dos Genitais Femininos/radioterapia , Humanos , Prevalência , Qualidade de Vida/psicologia , Autorrelato , Estresse Psicológico/epidemiologia , Estresse Psicológico/etiologia , Inquéritos e QuestionáriosRESUMO
Background: Oncology patients who are migrants or refugees face worse outcomes due to language and communication barriers impacting care. Interventions such as consultation audio-recordings and question prompt lists may prove beneficial in mediating communication challenges. However, designing robust research inclusive of patients who do not speak English is challenging. This study therefore aimed to: a) pilot test and assess the appropriateness of the proposed research design and methods for engaging migrant populations, and b) determine whether a multi-site RCT efficacy assessment of the communication intervention utilising these methods is feasible. Methods: This study is a mixed-methods parallel-group, randomised controlled feasibility pilot trial. Feasibility outcomes comprised assessment of: i) screening and recruitment processes, ii) design and procedures, and iii) research time and costing. The communication intervention comprised audio-recordings of a key medical consultation with an interpreter, and question prompt lists and cancer information translated into Arabic, Greek, Traditional, and Simplified Chinese. Results: Assessment of feasibility parameters revealed that despite barriers, methods utilised in this study supported the inclusion of migrant oncology patients in research. A future multi-site RCT efficacy assessment of the INFORM communication intervention using these methods is feasible if recommendations to strengthen screening and recruitment are adopted. Importantly, hiring of bilingual research assistants, and engagement with community and consumer advocates is essential. Early involvement of clinical and interpreting staff as key stakeholders is likewise recommended. Conclusion: Results from this feasibility RCT help us better understand and overcome the challenges and misconceptions about including migrant patients in clinical research.
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PURPOSE: Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This study assessed the feasibility of collecting longitudinal data on cognition in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent via self-report, neuropsychological assessment, peripheral markers of inflammation, and neuroimaging. An exploration and description of patterns of cancer-related cognitive impairment over the course of treatment and recovery was also undertaken and will be reported separately. METHODS: Eligible participants completed repeated measures of cognition including self-report and neuropsychological assessment, and correlates of cognition including blood cell-based inflammatory markers, and neuroimaging at three pre-specified timepoints, time 1 (T1) - pre-treatment (treatment naïve), time 2 (T2) - mid-treatment, and time 3 (T3) - 6 to 8 weeks post-completion of treatment. RESULTS: 30/33 eligible patients (91%, 95% CI: 76%, 97%) were recruited over 10 months. The recruitment rate was 3 patients/month (95% CI: 2.0, 4.3 patients/month). Reasons for declining included feeling overwhelmed and rapid treatment commencement. Mean age was 57 years (SD = 17 years) and 16/30 (53%) were male. Most patients (20/30, 67%) had diffuse large B cell lymphoma or Hodgkin lymphoma (4/30, 13%). The neuroimaging sub-study was optional, 11/30 participants (37%) were eligible to take part, and all agreed. The remaining 19 participants were ineligible as their diagnostic PET/CT scan was completed prior. Retention and compliance with all assessments were 89 to 100% at all timepoints. Only one participant was withdrawn due to disease progression. CONCLUSIONS: Findings from this study including excellent recruitment, retention, and compliance rates demonstrate it is feasible to longitudinally assess cognition in people with newly diagnosed aggressive lymphoma during their initial treatment and recovery to inform the development of future research to improve patient experiences and cognitive outcomes. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12619001649101.
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Disfunção Cognitiva , Linfoma não Hodgkin , Adulto , Idoso , Austrália , Disfunção Cognitiva/etiologia , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Tomografia por Emissão de Pósitrons combinada à Tomografia ComputadorizadaRESUMO
BACKGROUND AND AIMS: Patients with neuroendocrine tumours (NET) are at nutritional risk due to symptoms and treatment side-effects. Current evidence-based guidelines lack information regarding optimal nutritional management. This study aimed to describe health professional knowledge and management of nutrition complications in GEP NET patients and summarise current international practice. METHODS: Multidisciplinary health professionals who regularly provide care for NET patients, were invited to participate in a 21-item online survey. Survey questions asked about symptom prevalence, nutrition screening, assessment practices, and vitamin deficiency screening and supplementation practices. General demographic information was recorded. RESULTS: In total 73 health professionals completed the survey. Many worked in Australia (52%) and the United Kingdom (19%). Most responses were provided by medical oncologists (25%), nurses (23%) and dietitians (30%). Diarrhoea and fatigue were reported as the most common symptoms (86% and 60%, respectively) and of greatest concern to patients with NET (80% and 52%, respectively). Provision of advice for symptom management, weight loss and food intolerances was reported by 92%, 59% and 41%, respectively. Overall, 38% carried out screening/assessment for malnutrition and screening for vitamin deficiencies, respectively. Health professionals reported on the lack of NET-specific nutrition guidelines and hence used general oncology nutrition guidelines to direct their practice. CONCLUSIONS: This is the first international survey of nutrition knowledge and practices among NET health professionals. Results highlight variations in nutrition screening and assessment practices and identify a gap in NET-specific guidelines addressing nutrition issues in this at-risk patient group.
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Carcinoma Neuroendócrino , Desnutrição , Nutricionistas , Pessoal de Saúde , Humanos , Conhecimento , Desnutrição/complicações , Desnutrição/diagnósticoRESUMO
The Charlson Comorbidity Index (CCI) is a highly cited and well established tool for measuring comorbidity in clinical research, but there are problems with its use in practice. Like most comorbidity summary measures, the CCI was developed to adjust for prognostic comorbidities in statistical models, particularly those exploring associations between a risk of death or survival time and other patient-related and disease-related factors. Despite this, the CCI is often used in cancer research to measure all comorbidity, or as a multimorbidity measure, and CCI scores are often used to assess the prognostic importance of multiple health conditions. In the latter case, it is not at all surprising that researchers report a significant association between CCI scores and a risk of death or survival times because CCI scores provide a summary of the presence or absence of a set of prognostic comorbidities. Advances in multimorbidity research require specific attention to the methods used to develop relevant indices. Published literature on the association between the comorbidity and risk of death or survival time should be interpreted with caution, especially if the CCI was used to provide a measure of comorbidities.
Assuntos
Multimorbidade , Humanos , Estudos Transversais , Comorbidade , Prognóstico , Estudos EpidemiológicosRESUMO
Cross-sectional studies report that up to 25% of people with gastroenteropancreatic neuroendocrine tumours (GEP NET) are malnourished. However, the changes in nutritional status and dietary intake over time are unknown. The present study aimed to comprehensively describe the impact of a GEP NET on nutritional status and quality of life (QOL). Patients diagnosed with a GEP NET were recruited to this prospective longitudinal study on initial attendance to the NET Unit at two tertiary hospitals in Melbourne (VIC, Australia). Patient self-reported QOL measures (European Organisation for Research and Treatment Cancer QLC-C30 and QLC-GINET21) and nutritional outcomes (nutritional status, weight change, fat-free mass [FFM], dietary change, dietitian contact) were collected bi-monthly for six months. Sixty-one patients were recruited (66% male) with a mean ± SD age of 62 ± 12 years, predominantly diagnosed with small intestinal NET and Grade 1/2 disease. Commonly reported symptoms were fatigue (79%), abdominal discomfort (75%) and pain (68%). More patients were malnourished at baseline than at 6 months (29% vs. 13%). Over this 6 months, 48% lost weight, 20% lost ≥ 5% of their body weight, and 62% lost FFM with an average FFM loss of 2.8 kg (95% confidence interval = 2.0, 3.6), consistent with altered body composition. Dietary change was reported by 56% at baseline and 53% at six months, but only 21% consulted a dietitian at baseline and 18% at 6 months. Clinically significant loss of weight and FFM affected many patients with a GEP NET; however, few patients were referred to/or received a consultation with a dietitian. Valid screening practices are needed to identify weight loss and nutrition issues in GEP NET patients, and to facilitate referral to dietitian services.