Attitudes of patients towards cancer clinical trials (original) (raw)
Related papers
Who Needs What? Perceptions of Patients and Caregivers in Oncology Phase 1 Trials
Journal of Patient Experience
Background: The study design and nature of oncology phase 1 clinical trials create a uniquely vulnerable patient population yet little research has been conducted to identify the added burden these trials create for both cancer patients and their caregiver(s). Objective: Examining the perceptions and needs of patients and their caregivers participating in phase 1 oncology clinical trials, the investigators tested the hypothesis that the caregiver will exhibit a higher level of burden and/or distress than the patient. Method: A mixed-methods exploratory process utilizing patient and caregiver interviews and quality-of-life questionnaires was used to assess the psychosocial burdens associated with oncology clinical trial participation. A qualitative and quantitative analysis of the responses were 8 performed. Result: Both patients and caregivers reported similar themes identifying the burdens and benefits related to phase 1 clinical trial participation. However, the caregivers’ expres...
Supportive Care in Cancer, 2023
Purpose Clinical communication and facilitating informed and sound medical decisions become challenging as patients age and suffer from age-associated impairments. Family caregivers are perceived as essential actors in addressing these challenges. Here, we explore physicians' perspectives on family caregivers' roles and their involvement in consultations and therapy decision-making situations of elderly cancer patients. Methods We examined 38 semi-structured interviews with physicians from different specialities (oncologists, non-oncology specialists, and general practitioners) in Germany who treated elderly cancer patients. Data were analyzed using reflexive thematic analysis. Results We identified five general and distinct perspectives on the involvement of family caregivers in the therapy process. Family caregivers are seen as (1) translators of medical information; (2) providers of support for the patient; (3) providers of information about the patient; (4) stakeholders with relevant points of view regarding the treatment decision; or (5) individuals who have a disruptive influence on the consultation. The interviewed physicians rarely involved family caregivers closely in consultations. Conclusions Although physicians frequently attribute supportive roles to family caregivers, they rarely include them in consultations. Previous studies have found that a triadic setting is often better suited to agreeing upon a patient-centered and needs-based treatment decision for older cancer patients. We infer that physicians too rarely recognize the potential importance of family caregivers. Educators should further integrate family caregiver involvement and its implications in general medical education and professional training.
2015
Background: Delivery of chemotherapy treatment in the last twenty years has shifted from inpatient to outpatient settings. Helping patients to manage adverse treatment effects has become the domain of family and friends (carers). A healthcare service and policy imperative was the need to provide carers with more support. Yet, service providers were unclear on how best to do this. Overall Aim: To identify and develop interventions to enable healthcare professionals to prepare and support family and friends (carers) in the chemotherapy setting. Methodology: An engaged scholarship and participatory approach underpinned by the initial iterative phases of the UK MRC (2000; 2008) Framework for Development and Evaluation of Complex Interventions. In the pre-clinical phase qualitative methods were used, including: participatory observation (>250 hours), in-depth interviews with healthcare professionals 4.12.2
Needs and expectations of family caregivers of cancer patients in palliative care: A study protocol
Frontiers in Psychology, 2023
Cancer has an associated burden that continues to grow, affecting patients, family caregivers, and the individual's community. The family caregivers' unmet needs may harmfully jeopardize their well-being and the patient's health outcomes. Therefore, it is essential to understand the needs and expectations of family caregivers of cancer patients to develop and improve care practices. The present study aims to explore the needs and expectations of family caregivers of cancer patients in palliative care. This qualitative, descriptive exploratory study will use purposive sampling to recruit family caregivers and healthcare professionals from the palliative care units of two hospital centers in Lisbon and Tagus Valley. First, the Focus group will be performed until data saturation occurs. Then, a conventional thematic analysis will be applied to analyze data with the help of the coding software QDA Miner Lite database. This study's findings will help identify gaps in care and provide data that can support healthcare professionals in providing evidence-based centered care to family caregivers. It can also generate knowledge that may help stakeholders to develop a comprehensive support system for cancer survivors in palliative care and their family caregivers.
Psycho-Oncology, 2000
Family members are an integral part of a patient's cancer care from the moment the diagnosis is delivered to the conclusion of treatment. Family members bring with them a range of emotional reactions, interpersonal dynamics and expectations for the care the patient receives. This study is part of a multi-institutional project to continue to improve the process of cancer care. In this study, 19 focus groups (11 patient and 8 provider) were conducted concerning issues related to doctor-patient communication in eight cancer centers in the United States. The content of the conversations was analyzed and thematic categories emerged that highlight the various strengths and difficulties associated with family involvement. The focus groups' comments support the need for explicit conversations between professional caregivers, patients and their loved ones, in order to negotiate the expectations and needs of each team member. Implications for clinical practice and strategies for working with family members are offered.
Trials, 2017
Background: Family caregivers (FC) often experience higher distress levels than their relative with cancer. Many cancer centers have implemented distress screening programs, but most of them concentrate their efforts on patients, with little attention to their FC. To fill this gap, a pragmatic intervention has been designed to improve supportive care for FC of patients with lung cancer. This article describes the study protocol of a single-center randomized controlled trial to assess its effectiveness. Methods/design: A total of 120 lung cancer patients and their FC are randomly assigned to the experimental group (exposed to intervention, N = 60) or to the control group (usual care, N = 60). The intervention includes: (1) systematic FC distress screening and problem assessment near their relative's cancer diagnosis, and every 2 months, (2) privileged contact with an oncology nurse (ON) away from the patient to address FC problems and (3) liaison by the ON with the family physician of FC reporting high distress (thermometer score ≥5/10), or problems relying on FP expertise. In both groups, FC, patient and process-of-care outcomes are measured at baseline and every 3 months, up to 9 months. The primary endpoint is FC distress measured by the Hospital Anxiety and Depression Scale (HADS) and the Psychological Distress Index used in the Quebec Health Survey (PDQHS). Individual interviews with 10 FC and a focus group with the oncology team will be conducted at the study end to further document the effectiveness of the intervention and its impact on quality of life (for FC) and practice organization (for the oncology team). Discussion: This trial will assess the effectiveness of an innovative intervention based on interprofessional collaboration between primary care and oncology care. It targets a population in great need, yet often neglected, and has the potential to clearly improve patient and caregiver experience of cancer care, and reduce the burden of disease.
Addressing the needs of caregivers of cancer patients in general practice: a complex intervention
Quality in primary care, 2010
This study aimed to develop an innovation to assist general practitioners (GPs) in Australia to proactively address the needs of caregivers of people with cancer. Six GPs were video recorded each consulting six actor-patients in their respective practices. All cases depicted caregivers of people with cancer. The patients were instructed to complete a Needs Assessment Tool for Caregivers (NAT-C), before the consultation. Actor-patients were instructed to present the NAT-C to three of the six GPs they consulted, selected at random. Two assessors independently reviewed each consultation performance using the Leicester Assessment Package (LAP). The practitioners and actor-patients focused on the value of the NAT-C and how it could be deployed to best effect in a subsequent 'stimulated recall session'. Thirty-four consultations were successfully recorded. The mean duration of consultations was 13 min. 47 sec. (range 6 min. 3 sec. to 22 min. 51 sec.). GPs differed in core competen...
The Time Is Now: Assessing and Addressing the Needs of Cancer Caregivers Editorial
In 2007, the Institute of Medicine issued a report outlining the components of effective cancer care, which included addressing the psychosocial needs of informal caregivers of patients with cancer. 1 This aspirational goal is a challenge given the growing population of cancer survivors and the associated number of informal caregivers. In 2013, it was estimated that there were 4 million informal caregivers for adult patients with cancer in the United States, 2 although this was almost certainly an underestimate given the 14.5 million cancer survivors in the United States at the beginning of 2014. 3 The extent of care provided by these informal caregivers is significant, far exceeding the care provided by professional caregiv-ers: averaging 8.3 hours per day for 13.7 months. 4 As cancer treatment has become more complicated and more often delivered in the outpatient setting, the care and well-being of patients with cancer has become increasingly dependent on informal caregivers. These shifts in cancer treatment have occurred at the same time that informal caregivers have become increasingly likely to be employed outside the home, and thus are juggling the demands of work and caregiving. There is clear evidence that caregivers have psychosocial needs. As described in the article in the current issue of Cancer , Sklenarova et al surveyed cancer caregiver and patient dyads regarding their unmet needs, distress, anxiety, and depression. 5 Their results indicated that the caregivers were more distressed and more anxious than the patients. This result is consistent with a large and growing body of literature that has documented the significant distress experienced by caregiv-ers of patients with cancer. Indeed, caregivers experience a range of psychological complications, 6 including significant mood disturbance. Although some studies have reported rates of anxiety and depression for caregivers that are comparable to those of the patients for whom they provide care, 7,8 others have reported rates for caregivers that surpass those of patients. 7,9,10 For example, rates of depression of between 12% and 59% and rates of anxiety of between 30% and 50% 11,12 have been reported in samples of family caregivers, in comparison with rates of depression of between10% and 25% 13 and rates of anxiety of between 19% and 34% 14 noted in patient samples. Higher rates of depressive and anxious symptomatology are found among caregivers of patients with cancer who are receiving active treatment, 15 survivors after treatment, 16 and patients with advanced disease, 9 in comparison with the rates for the patients for whom they provide care. Therefore, across all points in the caregiving trajectory, cancer caregivers represent a population at significant risk of psychiatric morbidity and potentially in need of psychosocial services. Sklenarova et al found that 43.6% of caregivers reported more than10 unmet needs and only 14.4% reported no unmet needs. 5 In comparison, Soothill et al reported that13.8% of the caregivers they surveyed had 10 or more unmet needs and 57.4% indicated no unmet needs. 17 The latter study documented that caregivers reported more unmet needs than patients, and although Skelnarova et al also surveyed patients about their unmet needs, unfortunately they did not report these data in their article nor was a comparison made of the two groups. The most common needs identified in the study by Sklenarova et al concern fears regarding the patient's deterioration and the risk of disease recurrence and feelings about death and dying. 5 Other needs included information concerning alternative therapies, benefits and side effects of treatment, and the patient's prognosis. The unmet needs identified in the study by Soothill et al were more likely to be either practical or emotional in nature. 17 These differences may be related to the different assessment measures used in these two studies, the different cultures assessed, or some other undetermined difference. Unfortunately, as is often the case in
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2015
Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy. Forty-seven carers were recruited, randomised between the intervention (n = 24) and control (n = 23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups. Recruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the 'Take Care' intervention rep...
Acknowledging cancer as a family disease: A systematic review of family care in the cancer setting
European Journal of Oncology Nursing, 2020
Family members are a part of the team to improve the outcomes of the person with cancer. Families require support and information to optimise their care, however, their needs are often unacknowledged and within clinical areas there is a lack of family focused interventions. Studies highlight families' needs but lack a family representation. The aim was to explore research with family as the unit-of-care during cancer treatment. Method The Pickering systematic quantitative literature review method; a 15-step process from searching, database development and analysis was followed. Research published 2008-2019 within databases: MEDLINE, SCOPUS, PsycINFO, Cochrane, CINAHL; key words, 'family* or caregiver*, and cancer*, neoplasm* and coping*, distress* in November 2019. Quality assessment completed using Mixed Methods Appraisal Tool, descriptive quantitative analysis and thematic analysis. Results Studies involving patients and family members were included in the review (N=73). The analysis identified participants had a mean age of 58 years and primarily lung, breast or prostate cancer. Over 80% were from America and European countries; 93% had a dyad sample, quantitative 2 Cancer as a family disease studies (76%). There was eight intervention studies between four to sixteen weeks long, focused on family wellbeing. Themes described the impact of cancer on the whole family, the importance of communication between family members, and resources for family members. Conclusion The review identified four main scales and optimum intervention styles. Family research in the adult cancer needs to focus on intervention studies, increase international focus and inclusion of other family members such as children, friends and older adults.