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)
Neoplasms , Terminology as Topic , Humans , Catheterization, Central Venous/adverse effects , Catheterization, Central Venous/methods , Central Venous Catheters/adverse effects , Device Removal , Medical Oncology/methodsABSTRACT
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 TopicABSTRACT
INTRODUCTION: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value-based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value-based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. METHODS: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. RESULTS: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person-centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value-based care. CONCLUSIONS: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value-based cancer care. PATIENT OR PUBLIC CONTRIBUTION: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co-design approaches are embedded in our work.
Subject(s)
Interviews as Topic , Lung Neoplasms , Qualitative Research , Humans , Lung Neoplasms/therapy , Male , Female , Aged , Middle Aged , Australia , Quality of Life , Aged, 80 and overABSTRACT
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/therapyABSTRACT
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 ComplianceABSTRACT
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 ServicesABSTRACT
PURPOSE: Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This qualitative sub-study was undertaken as part of a larger prospective longitudinal study in which recruitment and retention were very high. The aim was to gain an understanding of participants reasons for ongoing participation, at a time of heightened stress related to a new diagnosis of aggressive lymphoma and the rapid commencement of treatment. METHODS: This qualitative descriptive sub-study included semi-structured interviews with twenty-seven participants. Interviews were recorded and transcribed, and a thematic descriptive approach was used to analyse the data. RESULTS: Twenty-seven interviews were completed. Four themes described participants' motivation to consent and continue with the study. These included ease of participation, personal values, self-help and valued additional support. Participants understood the requirements of the study, and data collection occurring during hospital visits was perceived to be convenient. Interviewees confirmed that the study fulfilled desire to "help others". Although testing was intense and challenging, it provided feedback on current functioning and was described by some as a "welcome distraction" and enjoyable. Finally, interaction with the study nurse was perceived as an additional beneficial oversight and support. CONCLUSION: Achieving sustained participation in a prospective study with patients undergoing treatment is facilitated where the logistical demands of data collection are minimised; a clinician from the service is included; the tasks are seen as inherently interesting; and care is taken to provide empathic support throughout. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12619001649101.
Subject(s)
Cognitive Dysfunction , Lymphoma, Non-Hodgkin , Neoplasms , Australia , Cognitive Dysfunction/etiology , Humans , Longitudinal Studies , Motivation , Prospective Studies , Qualitative ResearchABSTRACT
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 TomographyABSTRACT
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 , AustraliaABSTRACT
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 LifeABSTRACT
AIMS AND OBJECTIVES: This study set out to understand the experiences and expectations of scalp cooling among women with early-stage breast cancer. The objective was to develop patient co-produced information resources to better inform and prepare women considering scalp cooling during chemotherapy. BACKGROUND: Treatment-induced alopecia is a common concern among women preparing for chemotherapy. Evidence indicates that many women feel inadequately prepared for scalp cooling, resulting in potentially mitigable distress and disappointment. DESIGN: A single-site, sequential, explanatory mixed-methods design was used. Participants included women with early-stage breast cancer who had previously or were currently using, scalp cooling. Women completed an online survey exploring scalp cooling experiences and expectations and self-selecting participants took part in one semi-structured, audio-recorded interview. Guidelines for Good Reporting of a Mixed Methods Study were followed. RESULTS: Forty-nine women (69%) consented to take part in the survey and 23 took part in an interview. Most women described losing more hair than they expected. Many described feeling inadequately prepared for the discomfort of scalp cooling; the additional time needed to accommodate scalp cooling during treatment and, that they lacked information about self- care to help minimise hair loss. Importantly, several participants described variability in nurses' knowledge and practical skills regarding scalp cooling. CONCLUSIONS: To optimise experience of scalp cooling, women need comprehensive preparatory information about variability in efficacy of scalp cooling; time needed to accommodate scalp cooling; hair care during treatment, and the potential discomfort associated with it. They also need nurses to be confident and well informed about scalp cooling processes. RELEVANCE TO CLINICAL PRACTICE: Our study led to the development of online, patient co-produced resources to help prepare and inform women considering using scalp cooling; and an online scalp cooling training module and checklist for nurses. Links to the resources are included in the manuscript.
Subject(s)
Antineoplastic Agents , Breast Neoplasms , Hypothermia, Induced , Nurses , Alopecia/chemically induced , Alopecia/drug therapy , Antineoplastic Agents/therapeutic use , Antineoplastic Combined Chemotherapy Protocols , Breast Neoplasms/drug therapy , Clinical Competence , Female , Humans , Hypothermia, Induced/methods , Male , ScalpABSTRACT
AIM: The Australian 'There is no place like home' project is implementing a paediatric low-risk febrile neutropenia (FN) programme across eight paediatric hospitals. We sought to identify the impact of the coronavirus disease 2019 (COVID-19) pandemic on programme implementation. METHODS: Paediatric oncology, infectious diseases and emergency medicine health-care workers and parent/carers were surveyed to explore the impact of the COVID-19 pandemic on home-based FN care. Online surveys were distributed nationally to health-care workers involved in care of children with FN and to parents or carers of children with cancer. RESULTS: Surveys were completed by 78 health-care workers and 32 parents/carers. Overall, 95% of health-care workers had confidence in the safety of home-based FN care, with 35% reporting changes at their own hospitals in response to the pandemic that made them more comfortable with this model. Compared to pre-pandemic, >50% of parent/carers were now more worried about attending the hospital with their child and >80% were interested in receiving home-based FN care. Among both groups, increased telehealth access and acceptance of home-based care, improved patient quality of life and reduced risk of nosocomial infection were identified as programme enablers, while re-direction of resources due to COVID-19 and challenges in implementing change during a crisis were potential barriers. CONCLUSION: There is strong clinician and parent/carer support for home-based management of low-risk FN across Australia. Changes made to the delivery of cancer care in response to the pandemic have generally increased acceptance for home-based treatments and opportunities exist to leverage these to refine the low-risk FN programme.
Subject(s)
COVID-19 , Febrile Neutropenia , Australia , Child , Humans , Pandemics , Parents , Quality of Life , SARS-CoV-2ABSTRACT
BACKGROUND: Current international consensus is that 'early' referral to palliative care services improves cancer patient and family carer outcomes. In practice, however, these referrals are not routine. An approach which directly addresses identified barriers to early integration of palliative care is required. This protocol details a trial of a standardized model of early palliative care (Care Plus) introduced at key defined, disease-specific times or transition points in the illness for people with cancer. Introduced as a 'whole of system' practice change for identified advanced cancers, the key outcomes of interest are population health service use change. The aims of the study are to examine the effect of Care Plus implementation on (1) acute hospitalisation days in the last 3 months of life; (2) timeliness of access to palliative care; (3) quality and (4) costs of end of life care; and (5) the acceptability of services for people with advanced cancer. METHODS: Multi-site stepped wedge implementation trial testing usual care (control) versus Care Plus (practice change). The design stipulates 'control' periods when usual care is observed, and the process of implementing Care Plus which includes phases of planning, engagement, practice change and evaluation. During the practice change phase, all patients with targeted advanced cancers reaching the transition point will, by default, receive Care Plus. Health service utilization and unit costs before and after implementation will be collated from hospital records, and state and national health service administrative datasets. Qualitative data from patients, consumers and clinicians before and after practice change will be gathered through interviews and focus groups. DISCUSSION: The study outcomes will detail the impact and acceptability of the standardized integration of palliative care as a practice change, including recommendations for ongoing sustainability and broader implementation. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN 12619001703190 . Registered 04 December 2019.
Subject(s)
Neoplasms , Palliative Care , Australia , Hospitalization , Hospitals , Humans , Neoplasms/therapy , Outcome Assessment, Health Care , State MedicineABSTRACT
Neuroendocrine tumors (NETs) have increased in incidence and prevalence over the past 2 decades and affect approximately 170,000 people in the United States alone. Gastroenteropancreatic (GEP) NETs (GEP NET) are a heterogeneous group of rare tumors that have distinct effects on the body due to their tumor location and potential to secrete hormones and peptides. Clinical practice guidelines and consensus guidelines for GEP NETs with regard to best practice for diagnosis, treatment, and medical management are available, but the supportive care needs and optimal nutritional management of patients affected by these unique tumors remain under-researched: evidence to guide clinical practice is lacking. The pathophysiology of the disease and its treatment can cause various symptoms that can have significant effects on vitamin synthesis and absorption, dietary habits, weight change, and appetite. Deficiency of fat-soluble vitamins and niacin exists amongst patients with GEP NET, particularly those on treatment with somatostatin analogs and with serotonin-secreting tumors, respectively. Malnutrition and dietary modification amongst patients with GEP NET is more prevalent than initially thought: up to 25% of inpatients with GEP NET are malnourished. Food intolerance is also reported in up to 40-90% of these patients, though its misdiagnosis is common. This review summarizes the evidence regarding the impact of GEP NET and its treatment on nutritional factors in these patients with emphasis on malnutrition, vitamin deficiencies, dietary intake, and quality of life. Recommendations for clinical practice and research approaches to address these nutritional issues are discussed.
Subject(s)
Feeding Behavior , Intestinal Neoplasms/complications , Intestinal Neoplasms/metabolism , Malnutrition , Neuroendocrine Tumors/complications , Neuroendocrine Tumors/metabolism , Pancreatic Neoplasms/complications , Pancreatic Neoplasms/metabolism , Quality of Life , Stomach Neoplasms/complications , Stomach Neoplasms/metabolism , HumansABSTRACT
OBJECTIVE: To develop and test a guideline document to advise the content of a summarised patient information form (SPIF) regarding cancer clinical trials. METHODS: A two-phase study was undertaken to inform the development of the guideline document. In phase 1, 15 statements drawn from an international Delphi study and participant commentary were used to draft content for the guideline document. In phase 2, Delphi participants were invited to contribute to a five-step process via an online survey, to feedback on the guideline document, including the process for guideline formulation, testing application, revision, utility and clarity assessment, and completion. RESULTS: Over 73% of respondents to the online survey agreed that a sample SPIF generated by the draft guideline could support patient decision making. After the draft guideline revision, the researcher and four health professionals used the guideline to independently create a SPIF. The Flesch-Kincaid reading ease scores of the sample SPIFs were between 61.3 and 66.5, with reading levels between 7.8 and 8.8, indicating that the guideline document can assist health professionals with the generation of an understandable SPIF. The reference group members provided positive feedback on the guideline document, and an expert on plain language in healthcare information proofread the guideline document. CONCLUSION: The approach used in the study ensured the potential of the guideline document developed to enable generation of SPIFs that provide patients considering participation in a cancer clinical trial with essential and understandable information to support their decision making.
Subject(s)
Neoplasms , Decision Making , Delivery of Health Care , Health Personnel , Humans , Language , Neoplasms/therapyABSTRACT
OBJECTIVE: nformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice. METHODS: We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction. RESULTS: The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one-third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered. CONCLUSIONS: Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation.
Subject(s)
Caregivers/psychology , Health Promotion/methods , Neoplasms/psychology , Counseling/methods , Health Behavior , Humans , Neoplasms/nursing , Social SupportABSTRACT
PURPOSE: This study assessed the feasibility and acceptability of an online mindfulness-based intervention (MBI) for people diagnosed with melanoma. The potential benefit of the MBI on fear of cancer recurrence (FCR), worry, rumination, perceived stress and trait mindfulness was also explored. METHODS: Participants who have completed treatment for stage 2c or 3 melanoma were recruited from an outpatient clinic and randomly allocated to either the online MBI (intervention) or usual care (control). The 6-week online MBI comprised short videos, daily guided meditations and automated email reminders. Participants were asked to complete questionnaires at baseline and at 6-week post-randomisation. Study feasibility and acceptability were assessed through recruitment rates, retention and participant feedback. Clinical and psychosocial outcomes were compared between groups using linear mixed models. RESULTS: Sixty-nine (58%) eligible participants were randomised (46 in the intervention; 23 in the control group); mean age was 53.4 (SD 13.1); 54% were female. Study completion rate across both arms was 80%. The intervention was found helpful by 72% of the 32 respondents. The intervention significantly reduced the severity of FCR compared to the control group (mean difference = - 2.55; 95% CI - 4.43, - 0.67; p = 0.008). There was no difference between the intervention and control groups on any of the outcome measures. CONCLUSIONS: This online MBI was feasible and acceptable by people at high risk of melanoma recurrence. It significantly reduced FCR severity in this sample. Patients valued accessing the program at their own pace and convenience. This self-guided intervention has the potential to help survivors cope with emotional difficulties. An adequately powered randomised controlled trial to test study findings is warranted.
Subject(s)
Melanoma/therapy , Mindfulness/methods , Skin Neoplasms/therapy , Adaptation, Psychological , Anxiety/etiology , Anxiety/psychology , Anxiety/therapy , Cancer Survivors/psychology , Feasibility Studies , Female , Humans , Internet , Male , Melanoma/psychology , Middle Aged , Neoplasm Recurrence, Local/psychology , Neoplasm Recurrence, Local/therapy , Outcome Assessment, Health Care , Pilot Projects , Skin Neoplasms/psychology , Surveys and Questionnaires , Telemedicine/methodsABSTRACT
Malnutrition is prevalent in patients undergoing (chemo)radiotherapy (RT) for lung cancer. This pilot study tested the feasibility and acceptability of delivering an intensive nutrition intervention for lung cancer patients receiving RT. Twenty-four patients with lung cancer were randomized to receive the intervention which employed a care pathway to guide intensive dietary counseling from pretreatment until 6-wk posttreatment or usual care. Nutritional, fatigue, and functional outcomes were assessed using valid and reliable questionnaires before randomization, at the start and end of RT and 1- and 3-mo post-RT. Consent rate was 57% with an overall attrition of 37%. Subject compliance with the completion of study questionnaires was 100%. A clinically important mean difference indicated greater overall satisfaction with nutritional care in the intervention group (5.00, interquartile range [IQR] 4.50-5.00; 4.00, IQR 4.00-4.00). Clinically important differences favoring the intervention were observed for weight (3.0 kg; 95% confidence interval [CI] -0.8, 6.8), fat-free mass (0.6 kg; 95% CI -2.1, 3.3), physical well-being (2.1; 95% CI -2.3, 6.5), and functional well-being (5.1; 95% CI 1.6, 8.6), but all 95% CIs were wide and most included zero. Recruitment feasibility and acceptability of the intervention were demonstrated, which suggest larger trials using an intensive nutrition intervention would be achievable.