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1.
Support Care Cancer ; 32(5): 325, 2024 May 03.
Article in English | MEDLINE | ID: mdl-38700712

ABSTRACT

People with advanced cancer and cachexia experience significant body weight loss, adversely impacting physical function and quality of life (QOL). Effective, evidence-based treatments for cancer cachexia are lacking, leaving patients with unmet needs. Exercise holds promise to improve patient QOL. However, information on patients' experiences of exercise, including their ability to cope with structured exercise, is limited. PURPOSE: To explore patient experiences completing a structured, supervised exercise program for people with cachexia due to advanced cancer. METHODS: Semi-structured interviews were conducted with participants enrolled in a phase II feasibility, randomized controlled trial to explore their experiences of an 8-week virtually supervised exercise program delivered via videoconference technology. Interviews were analysed using reflexive thematic analysis. RESULTS: Seventeen participants completed interviews (female n = 9, 53%). Main interview themes included the following: (1) Deciding to exercise involves balancing concerns and expectations, (2) the exercise program is a positive experience, and (3) moving forward after the exercise program. While some participants initially held doubts about their physical capabilities and exercise safety, most wanted to exercise to enhance their wellbeing. Participants described the exercise program as a positive experience, offering diverse benefits. Some would have preferred in-person exercise, but all agreed the virtual format increased convenience. Participants emphasized the need to recommend the program to others in similar circumstances. They underscored the necessity and desire for ongoing support to sustain their new exercise habits. CONCLUSION: Based on patient experiences, virtually supervised exercise programming appears to be feasible and meaningful to people with advanced cancer and cachexia.


Subject(s)
Cachexia , Exercise Therapy , Neoplasms , Qualitative Research , Quality of Life , Humans , Cachexia/etiology , Cachexia/therapy , Female , Neoplasms/complications , Neoplasms/psychology , Male , Middle Aged , Exercise Therapy/methods , Aged , Adult , Feasibility Studies , Videoconferencing , Interviews as Topic
2.
BMC Cancer ; 24(1): 498, 2024 Apr 19.
Article in English | MEDLINE | ID: mdl-38641574

ABSTRACT

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.


Subject(s)
Catheterization, Central Venous , Central Venous Catheters , Adult , Humans , Central Venous Catheters/adverse effects , Catheterization, Central Venous/adverse effects , Medical Oncology , Health Facilities
3.
BMJ Open ; 14(4): e081084, 2024 Apr 22.
Article in English | MEDLINE | ID: mdl-38653511

ABSTRACT

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.


Subject(s)
Chemotherapy-Related Cognitive Impairment , Internet-Based Intervention , Lymphoma , Humans , Chemotherapy-Related Cognitive Impairment/rehabilitation , Cognitive Behavioral Therapy/methods , Cognitive Training , Feasibility Studies , Internet , Lymphoma/complications , Lymphoma/rehabilitation , Pilot Projects , Randomized Controlled Trials as Topic
4.
BMC Health Serv Res ; 24(1): 377, 2024 Mar 27.
Article in English | MEDLINE | ID: mdl-38539185

ABSTRACT

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.


Subject(s)
Neoplasms , Quality Indicators, Health Care , Humans , Consensus , Delphi Technique , Australia , Neoplasms/therapy
5.
JMIR Res Protoc ; 12: e48432, 2023 Nov 09.
Article in English | MEDLINE | ID: mdl-37943601

ABSTRACT

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.

6.
Cancer Nurs ; 2023 Nov 10.
Article in English | MEDLINE | ID: mdl-37962212

ABSTRACT

BACKGROUND: Preparing informal caregivers for a patient's transition to outpatient care is an important component of safe, quality hematological cancer care. The development of many novel therapies and emerging treatments has created opportunities to address the needs of informal caregivers following the discharge of patients from inpatient settings. OBJECTIVE: To review and synthesize the literature on the needs of informal caregivers of patients with a hematological malignancy postdischarge from inpatient care. INTERVENTIONS/METHODS: Integrative review methodology was used to explore the body of evidence available. This included a quality appraisal of qualitative, quantitative, and mixed-methods research findings, subsequent data extraction, and inductive thematic synthesis. RESULTS: One thousand eight articles were screened with 10 included in the review. Key insights into the needs of caregivers entering the outpatient setting were identified and grouped into key subheadings: Encountering complex emotions knowing what to know, little time for yourself, and collateral impact. CONCLUSION: Findings convey the complex and multiple needs of informal caregivers of hematological cancer patients. With a growing population of people with hematological malignancies and innovations in outpatient cancer therapies, there is a pressing need to codesign interventions to support their caregivers. IMPLICATIONS FOR PRACTICE: This review has identified a need for more robust research to coproduce interventions in collaboration with caregivers. In addition, interventions developed from further research should be tested in quality implementation science studies to determine their feasibility, sustainability, and impact on outcomes that matter to hematological cancer caregivers.

7.
Support Care Cancer ; 31(9): 554, 2023 Sep 02.
Article in English | MEDLINE | ID: mdl-37659009

ABSTRACT

PURPOSE: Although the financial burden and impact of a cancer diagnosis has been widely described in international literature, less understood is the availability and accessibility of services to ameliorate this need. This study reports the experiences of Australian lung cancer patients and health professionals delivering care, regarding factors that exacerbate and mitigate financial stress, and availability and accessibility of services to support people following a cancer diagnosis. METHODS: Qualitative semi-structured interviews with twenty-three lung cancer patients attending two metropolitan tertiary health services and eleven health professionals delivering care were undertaken during July-August 2021. RESULTS: Neither health service systematically screened for financial toxicity nor routinely provided information regarding potential financial impacts during consultations. Patients experienced lengthy delays in accessing welfare supports, provoking financial stress and worry. Health professionals reported limited resources and referral services to support patients with financial need; this was especially problematic for patients with lung cancer. They described its psychological impact on patients and their family members or carers and warned of its impact on ability to adhere to treatment. CONCLUSION: Available and accessibility of services addressing financial toxicity in Australian lung cancer patients is inadequate. Although financial stress is a common, distressing problem, health professionals feel hampered in their ability to help due to limited service availability. Left unaddressed, financial toxicity can impact treatment adherence, directly influencing health outcomes, and increase risk of poverty, amplifying social inequities. Findings highlight opportunity for actionable interventions like financial consent and routine screening and discussion of financial toxicity across care pathways.


Subject(s)
Financial Stress , Lung Neoplasms , Humans , Australia , Health Personnel , Lung Neoplasms/therapy , Treatment Adherence and Compliance
8.
Clin Lymphoma Myeloma Leuk ; 23(7): 505-514, 2023 07.
Article in English | MEDLINE | ID: mdl-37087351

ABSTRACT

BACKGROUND: Patients with multiple myeloma (MM) experience some of the highest levels of symptom burden of all hematological malignancies. Therefore, assessment of quality of life (QoL) is critical for the delivery of patient-centered cancer care. Patient reported outcome measures (PROMs) are commonly used to measure QoL in people with MM. However, it is unknown whether measures used, are appropriate and informative to address issues that matter most to patients. AIM: This exploratory study was designed to establish consumer endorsed PROMs to measure QoL in people with MM. METHOD: This was a descriptive, exploratory study. Participants were invited to provide feedback on the acceptability, appropriateness, and practicability of ten commonly used PROMs via telephone-based, semi-structured interviews and surveys. Data were analyzed using a manifest content analysis approach and descriptive statistics. RESULTS: 26 individuals participated in the study. Participants emphasized the importance of selecting a suite of PROMs that captures the diversity of quality-of-life experiences and priorities reported over the course of treatment, while minimizing the burden of completing PROMs. Based on these criteria, a suite of three PROMs - the MyPOS, the Brief Fatigue Inventory, and COST-FACIT were endorsed by study participants. CONCLUSION: To our knowledge, this is the first study of its kind to establish a suite of consumer-endorsed PROMs for use in clinical trials in patients with MM. Ensuring that the patient voice is at the center of advances in cancer treatment is a hallmark of quality cancer care.


Subject(s)
Multiple Myeloma , Humans , Multiple Myeloma/therapy , Quality of Life , Patient Reported Outcome Measures , Surveys and Questionnaires
10.
Healthcare (Basel) ; 11(4)2023 Feb 04.
Article in English | MEDLINE | ID: mdl-36832985

ABSTRACT

The emotional consequences of a cancer diagnosis are well documented and range from emotional distress, defined as suffering associated with feelings such as shock, fear, and uncertainty, through to psychological distress that may manifest as depression, anxiety, feelings of hopelessness, or heightened risk of suicide. This study set out to explore the assumption that the provision of emotional care should be the platform upon which all other aspects of cancer care are delivered and, that without attention to emotional care, no other aspects of cancer care can be fully realized. Utilizing qualitative focus groups and in-depth interviews with 47 patients, carers, and health professionals, emotional care was shown to be (1) fundamental to the provision of comprehensive cancer care, (2) essential to easing the burden of a cancer diagnosis and demands of treatment, (3) everyone's business, and (4) a component of cancer care at any time and every time. Future studies are needed to test interventions to enhance provision of intentional, purposeful, and individualized emotional care to help patents achieve the best health outcomes possible.

11.
J Adolesc Young Adult Oncol ; 12(2): 133-146, 2023 04.
Article in English | MEDLINE | ID: mdl-35787154

ABSTRACT

Adolescent and Young Adult (AYA) oncology is an internationally recognized established subspecialty in cancer care. Dedicated programs tailored to local environments endeavor to address unique medical, psychological, cognitive, and social needs that historically, health services have been challenged to meet. In recent years there has been a growing appreciation of the challenges facing AYA with incurable cancer and their parent caregivers. While health care professionals recognize the importance of parents' involvement in the care trajectory, there is less understanding of the services needed for support. This scoping review set out to identify and describe evidence available to better understand the services and approaches required from hospital teams to address the needs of parent caregivers and to identify gaps in knowledge to inform areas for further research. The question guiding this review is: What are the service needs of parent carers of AYA with incurable cancer. Using the Arksey and O'Malley scoping review framework, 1009 studies were identified from a broad search of relevant online databases, gray literature, and reference lists of published studies. After removing duplicates and ineligible studies, 492 abstracts were screened. Of these, 421 were ineligible, and 71 articles underwent full-text review. Eight studies were included in the final review. No single study was focused exclusively on parent caregivers of AYA with incurable cancer, demonstrating a paucity of quantitative and qualitative evidence to inform practice and a need for further research in the field.


Subject(s)
Caregivers , Neoplasms , Humans , Adolescent , Young Adult , Caregivers/psychology , Neoplasms/therapy , Neoplasms/psychology , Parents/psychology
12.
Support Care Cancer ; 31(1): 14, 2022 Dec 14.
Article in English | MEDLINE | ID: mdl-36513841

ABSTRACT

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.


Subject(s)
Neoplasms , Humans , Delphi Technique , Consensus , Neoplasms/therapy , Health Services
13.
BMC Health Serv Res ; 22(1): 1399, 2022 Nov 23.
Article in English | MEDLINE | ID: mdl-36419150

ABSTRACT

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.


Subject(s)
Investments , Lung Neoplasms , Humans , Cost-Benefit Analysis , Lung Neoplasms/therapy , Caregivers , Australia
14.
Support Care Cancer ; 30(9): 7731-7743, 2022 Sep.
Article in English | MEDLINE | ID: mdl-35699780

ABSTRACT

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.


Subject(s)
Cognitive Dysfunction , Lymphoma, Non-Hodgkin , Adult , Aged , Australia , Cognitive Dysfunction/etiology , Feasibility Studies , Female , Humans , Male , Middle Aged , Positron Emission Tomography Computed Tomography
15.
Clin Nutr ESPEN ; 49: 466-473, 2022 06.
Article in English | MEDLINE | ID: mdl-35623853

ABSTRACT

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.


Subject(s)
Carcinoma, Neuroendocrine , Malnutrition , Nutritionists , Health Personnel , Humans , Knowledge , Malnutrition/complications , Malnutrition/diagnosis
16.
Int J Nurs Stud ; 132: 104254, 2022 Aug.
Article in English | MEDLINE | ID: mdl-35617712

ABSTRACT

BACKGROUND: Colorectal cancer screening, including faecal immunohistochemical test, is an effective method for detecting colorectal cancer early. Nevertheless, faecal immunohistochemical test uptake among South Asian ethnic minorities is low because they have limited knowledge of and face barriers in accessing colorectal cancer screening. Tailored education and appropriate messaging has potential to convey to this population group the importance of colorectal cancer screening. OBJECTIVES: This study aimed to assess the acceptability and effectiveness of a family-based multimedia intervention to raise awareness of colorectal cancer screening and increase the uptake of faecal immunochemical tests among South Asian older adults. DESIGN: A cluster-randomised controlled trial with a wait-list control group. PARTICIPANTS: Three-hundred and twenty dyads of South Asian older adults and their younger family members were recruited at South Asian community centres and non-governmental organisations providing support services to local South Asians in six Hong Kong districts. METHODS: Group allocation of dyads during cluster randomisation was based on the group assignment of the district where they were recruited. The intervention comprised a multimedia health talk, conveying the importance of colorectal cancer screening and support from younger family members in encouraging their older relatives to undergo screening. Site coordinators assisted participants in accessing faecal immunohistochemical test. The primary outcome was increased uptake of faecal immunohistochemical test among South Asian older adults. Secondary outcomes included younger family members' encouragement of their older relatives to undergo faecal immunohistochemical test and their readiness to assist their relatives with the test. Acceptability of the intervention was measured by dyad satisfaction with the intervention. RESULTS: The proportion of older adults participating in faecal immunohistochemical testing was significantly higher among intervention dyads compared with controls (71.8% vs 6.8%, p < 0.001). No significant within-group change was observed on the willingness of younger family members in the intervention group to encourage older adults to undergo faecal immunohistochemical test, nor their readiness to assist older adults in doing so, although a decrease in both outcomes was observed among the control group. Most participants (>86%) were satisfied with the intervention. CONCLUSIONS: Our findings demonstrate the acceptability and effectiveness of the intervention in enhancing faecal immunohistochemical test uptake among South Asian older adults, and the benefit of using a family-based approach in the implementation of cancer screening interventions for these individuals. Implementation of the intervention as a component of usual care within South Asian communities is recommended. Trial registration ISRCTN72829325, 10 July 2018.


Subject(s)
Colorectal Neoplasms , Multimedia , Aged , Asian People , Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/prevention & control , Early Detection of Cancer/methods , Humans , Occult Blood
17.
BMC Palliat Care ; 21(1): 75, 2022 May 17.
Article in English | MEDLINE | ID: mdl-35578224

ABSTRACT

Cachexia is a prevalent muscle wasting syndrome among people with advanced cancer that profoundly impacts patient quality of life (QoL) and physical function. Exercise can improve QoL, physical function, and overall health in people with cancer and may be an important addition to treatment approaches for cancer cachexia. Greater understanding of patients' perception of exercise can help elucidate the feasibility of implementing exercise interventions for cancer cachexia and facilitate the design of patient-centered interventions. We aimed to describe the perception of exercise in patients with advanced cancer and cachexia, and capture exercise motivators, barriers, and preferences, to inform the feasibility of exercise interventions. Individual interviews (n = 20) with patients with locally advanced or metastatic cancer with cachexia were conducted and analyzed using reflexive thematic analysis. Main themes from interviews were: 1) Life is disrupted by cancer and cachexia; 2) Exercise offers hope; 3) Exercise barriers are multifaceted; and 4) Exercise access and support are important. Participants reported that their cancer and cachexia had intensely altered their lives, including ability to exercise. Exercise was perceived as important and participants described a hope for exercise to improve their health and wellbeing. Yet, several complex exercise barriers, such as burdensome cancer symptoms and the overwhelming impact of the COVID-19 pandemic, hindered exercise participation and prevented participants from fully realizing the perceived benefits of exercise. Factors believed to improve exercise engagement and overcome exercise barriers included increased exercise support (e.g., professional supervision) and accessibility (e.g., convenient locations). Patient-reported exercise barriers and preferences can inform the design of exercise interventions, particularly within future research studies aiming to establish exercise feasibility and efficacy in people with advanced cancer and cachexia.


Subject(s)
COVID-19 , Neoplasms , Cachexia/therapy , Humans , Neoplasms/complications , Neoplasms/therapy , Pandemics , Quality of Life
18.
J Neuroendocrinol ; 34(6): e13116, 2022 06.
Article in English | MEDLINE | ID: mdl-35415851

ABSTRACT

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.


Subject(s)
Malnutrition , Neuroendocrine Tumors , Aged , Cross-Sectional Studies , Female , Humans , Longitudinal Studies , Male , Malnutrition/diagnosis , Malnutrition/epidemiology , Malnutrition/etiology , Middle Aged , Neuroendocrine Tumors/complications , Neuroendocrine Tumors/epidemiology , Nutritional Status , Prevalence , Prospective Studies , Quality of Life , Weight Loss
19.
Cancer Med ; 11(9): 1965-1971, 2022 05.
Article in English | MEDLINE | ID: mdl-35257515

ABSTRACT

BACKGROUND: Understanding of factors that contribute to implementation of effective cancer multidisciplinary team meetings (MDMs) is still limited. Published literature on the effect of teamwork function, leadership roles, decision-making processes and structural components on the quality of MDMs was reviewed and synthesised. METHODS: In this paper, a MEDLINE review (September 2020) was performed to assess clinical decision-making in the context of MDM discussions. RESULTS: Twenty-nine eligible studies were included. Six studies addressed the infrastructural aspects of MDMs. Nine studies used either qualitative or mixed method approach to develop and validate observational tools to assess the quality of MDMs. Seven studies used qualitative approaches to explore the opinions of MDM members on factors that impact on the effectiveness of MDMs. Five studies used validated observational tools to observe and assess the effectiveness of MDMs. One prospective study explored the relationship between quality of information presented at MDMs and ability of MDM members to make clinical decisions. The final study prospectively tested the ability of a multicomponent intervention to improve decision-making processes within MDMs. CONCLUSIONS: A broad range of factors including teamwork, leadership, case complexity, decision-making processes and availability of patient information were identified to impact the quality of MDMs. Evidence currently available largely focuses on the development of tools to identify factors in need of improvement to optimise MDMs. Robust research is required to identify the factors that are demonstrated to enhance MDM quality which can then aid the standardisation of how MDMs are conducted.


Subject(s)
Neoplasms , Patient Care Team , Clinical Decision-Making , Data Collection , Humans , Neoplasms/therapy , Prospective Studies
20.
BMJ Open Respir Res ; 9(1)2022 Jan.
Article in English | MEDLINE | ID: mdl-35039313

ABSTRACT

INTRODUCTION: Exercise is important in the postoperative management of lung cancer, yet no strong evidence exists for delivery of home-based programmes. Our feasibility (phase I) study established feasibility of a home-based exercise and self-management programme (the programme) delivered postoperatively. This efficacy (phase II) study aims to determine whether the programme, compared with usual care, is effective in improving physical function (primary outcome) in patients after lung cancer surgery. METHODS AND ANALYSIS: This will be a prospective, multisite, two-arm parallel 1:1, randomised controlled superiority trial with assessors blinded to group allocation. 112 participants scheduled for surgery for lung cancer will be recruited and randomised to usual care (no exercise programme) or, usual care plus the 12-week programme. The primary outcome is physical function measured with the EORTC QLQ c30 questionnaire. Secondary outcomes include health-related quality of life (HRQoL); exercise capacity; muscle strength; physical activity levels and patient reported outcomes. HRQoL and patient-reported outcomes will be measured to 12 months, and survival to 5 years. In a substudy, patient experience interviews will be conducted in a subgroup of intervention participants. ETHICS AND DISSEMINATION: Ethics approval was gained from all sites. Results will be submitted for publications in peer-reviewed journals. TRIAL REGISTRATION NUMBER: ACTRN12617001283369.


Subject(s)
Lung Neoplasms , Self-Management , Exercise , Exercise Therapy/methods , Humans , Lung Neoplasms/surgery , Prospective Studies , Quality of Life , Randomized Controlled Trials as Topic
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