Dataset Information

Metastatic Breast Cancer Collateral Damage Project (MBCCD): Scale development and preliminary results of the Survey of Health, Impact, Needs, and Experiences (SHINE).

ABSTRACT: PURPOSE:Until recently, people with metastatic breast cancer (MBC) had a very poor prognosis. New treatment approaches have prolonged the time that people with MBC live, but their quality of life has received less attention. Consequently, the needs and concerns across financial, vocational, psychological, social, and physical domains in MBC patients are poorly understood-particularly regarding the collateral damage or longer-term, life-altering impacts of MBC and its treatments. This study's aims were to characterize MBC-related collateral damage, identify groups most likely to experience collateral damage, and examine its associations with psychological health, illness management, and health behaviors. METHODS:Participants (N?=?515) with MBC were recruited from Dr. Susan Love Research Foundation's Army of Women® and other advocacy organizations. Participants completed questionnaires of MBC-related collateral damage, depressive symptoms, anxiety, self-efficacy for managing oncologic treatments and physical symptoms, sleep, and physical activity. RESULTS:Eight domains of MBC-related collateral damage, as well as MBC-related benefit finding, were reliably characterized. Concerns about mortality/uncertainty were most prominent. Participants also endorsed high levels of benefit finding. Participants younger than 50 years, with limited financial resources, or with children under 18 at home reported the most collateral damage. Collateral damage was associated significantly with compromised psychological health, lower illness management efficacy, and poorer health behaviors, beyond sociodemographic and medical characteristics. CONCLUSIONS:Subgroups of MBC patients report long-term, life-altering consequences of MBC and its treatments, which relate to important health outcomes. Clinical implications and recommendations are discussed.

SUBMITTER: Williamson TJ

PROVIDER: S-EPMC6239969 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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Metastatic Breast Cancer Collateral Damage Project (MBCCD): Scale development and preliminary results of the Survey of Health, Impact, Needs, and Experiences (SHINE).

Williamson Timothy J TJ Love Susan M SM Clague DeHart Jessica N JN Jorge-Miller Alexandra A Eshraghi Leah L Cooper Ortner Heather H Stanton Annette L AL

Breast cancer research and treatment 20180516 1

<h4>Purpose</h4>Until recently, people with metastatic breast cancer (MBC) had a very poor prognosis. New treatment approaches have prolonged the time that people with MBC live, but their quality of life has received less attention. Consequently, the needs and concerns across financial, vocational, psychological, social, and physical domains in MBC patients are poorly understood-particularly regarding the collateral damage or longer-term, life-altering impacts of MBC and its treatments. This stu ...[more]

PMID: 29767345

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Project description:BackgroundThe review of collateral information is an essential component of patient care. Although this is standard practice, minimal research has been done to quantify collateral information collection and to understand how collateral information translates to clinical decision making. To address this, we developed and piloted a novel measure (the McLean Collateral Information and Clinical Actionability Scale [M-CICAS]) to evaluate the types and number of collateral sources viewed and the resulting actions made in a psychiatric setting.ObjectiveThis study aims to test the feasibility of the M-CICAS, validate this measure against clinician notes via medical records, and evaluate whether reviewing a higher volume of collateral sources is associated with more clinical actions taken.MethodsFor the M-CICAS, we developed a three-part instrument, focusing on measuring collateral sources reviewed, clinical actions taken, and shared decision making between the clinician and patient. To determine feasibility and preliminary validity, we piloted this measure among clinicians providing psychotherapy at McLean Hospital. These clinicians (n=7) completed the M-CICAS after individual clinical sessions with 89 distinct patient encounters. Scales were completed by clinicians only once for each patient during routine follow-up visits. After clinicians completed these scales, researchers conducted chart reviews by completing the M-CICAS using only the clinician's corresponding note from that session. For the analyses, we generated summary scores for the number of collateral sources and clinical actions for each encounter. We examined Pearson correlation coefficients to assess interrater reliability between clinicians and chart reviewers, and simple univariate regression modeling followed by multilevel mixed effects regression modeling to test the relationship between collateral information accessed and clinical actions taken.ResultsThe study staff had high interrater reliability on the M-CICAS for the sources reviewed (r=0.98; P<.001) and actions taken (r=0.97; P<.001). Clinician and study staff ratings were moderately correlated and statistically significant on the M-CICAS summary scores for the sources viewed (r=0.24, P=.02 and r=0.25, P=.02, respectively). Univariate regression modeling with a two-tailed test demonstrated a significant association between collateral sources and clinical actions taken when clinicians completed the M-CICAS (β=.27; t87=2.47; P=.02). The multilevel fixed slopes random intercepts model confirmed a significant association even when accounting for clinician differences (β=.23; t57=2.13; P=.04).ConclusionsThis pilot study established the feasibility and preliminary validity of the M-CICAS in assessing collateral sources and clinical decision making in psychiatry. This study also indicated that reviewing more collateral sources may lead to an increased number of clinical actions following a session.

Project description:ObjectivesPatients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service provision.DesignCross-sectional questionnaire survey of patients with pancreatic cancer in the UK.SettingIndividuals at any stage along the care pathway were recruited via five National Health Service sites in the UK, and online, from January to June 2018.Participants274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274). Of 212 providing gender details, 82 were male and 130 were female. Ninety per cent (192/213) described themselves as White British.Primary outcome measuresExperiences of communication and information; involvement in treatment decisions; supportive care needs.ResultsCommunication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be. Supportive care needs were greatest in psychological and physical/daily living domains. 49% (108/221) of respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease.ConclusionsPatients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appears to be the biggest gap in care. Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.

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Project description:BackgroundDespite a recent proliferation in web-based and digital resources that are designed to assist users in finding appropriate mental health treatment and supportive services, it can be overwhelming, confusing, and difficult for an individual or family member to access and use an appropriate navigation tool. As digital resources are increasingly sought after, there is an urgent need for a clearer understanding of digital navigation tools in order to help link individuals with the tool that is best suited to their needs.ObjectiveThe objective of this study was to determine the needs of individuals seeking mental health treatment and supportive services and to quantify their experiences and satisfaction with available digital navigation tools.MethodsA survey was offered via an email newsletter and social media posting throughout the extended membership of the National Alliance on Mental Illness, which includes both individuals with a mental health condition and their family members and support networks. A 13-item anonymous survey, which consisted of multiple-choice and open response options, was developed to measure participants' past use of and experiences with web-based, mobile, and phone-based navigation tools. The survey was available from April 9 through May 21, 2020.ResultsA total of 478 respondents completed the survey; the majority of respondents were female (397/478, 83.1%) and aged ≥35 years (411/478, 86%). Younger respondents were more likely to report seeking mental health services for themselves, while older respondents were more likely to be searching for such services on behalf of a family member. The majority of respondents seeking such services on behalf of a family member (113/194, 58.2%) required a combination of mental health treatment and supportive services. Furthermore, two-thirds of respondents (322/478, 67.4%) used a navigation tool to find treatment or services. The majority of respondents who provided feedback about their experiences with navigation tools (224/280, 80%) reported difficulties, with data availability and accuracy being the most commonly reported issues.ConclusionsThe survey results suggest that issues with data availability and accuracy in available navigation tools remain a major barrier for locating timely and appropriate mental health treatment and supportive services within the population of individuals seeking such services. Particularly for individuals seeking care on behalf of a family member, improving the accuracy of and users' experiences with navigation tools could have a major impact on effectively connecting people to treatment and support services.

Dataset Information

Metastatic Breast Cancer Collateral Damage Project (MBCCD): Scale development and preliminary results of the Survey of Health, Impact, Needs, and Experiences (SHINE).

Publications

Metastatic Breast Cancer Collateral Damage Project (MBCCD): Scale development and preliminary results of the Survey of Health, Impact, Needs, and Experiences (SHINE).

Similar Datasets

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