Cancer-related distress and unmet needs among newly diagnosed and longer-term cancer survivors from a community-based distress screening program.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 220-220 ◽  
Author(s):  
Joanne S. Buzaglo ◽  
Melissa F Miller ◽  
Victoria Kennedy ◽  
Margaret Longacre ◽  
Mitch Golant ◽  
...  
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Screening Tool ◽  
Unmet Needs ◽  
Health Care Team ◽  
Care Team ◽  
First Year ◽  
Newly Diagnosed ◽  
Distress Screening ◽  
Cancer Support

220 Background: As survival rates increase among cancer patients, quality of life needs become more salient. Cancer Support Source (CSS) is a distress screening, referral and follow up program that uses a validated distress screening tool and referral algorithm to link cancer patients to resources tailored to their needs. The objective of this study was to describe psychosocial concerns and unmet needs at different times since cancer diagnosis. Methods: English speaking cancer survivors (n = 905) across 26 affiliates of a nationwide cancer support organization participated in the CSS program by first completing a screening tool, including a 4 item depression subscale. Participants rated the level of concern (0 to 4) about 15 items and identified the help they wanted for each item (talk with a member of your health care team and/or connect you with online resources). We used regression analysis, adjusting for age, to examine differences by time since diagnosis ( < 1 y; ≥ 1 y) in level of distress; type of concerns (rated ≥ 2); and items selected to talk with the health care team. Results: The sample was 78% female, 10% Latino, 9% Black, and median age 57 y. 41% were breast cancer survivors, 6% lung, and 6% colorectal. More than half were within 1 y of their diagnosis (61%, n = 507); 39% ≥ 1 y (n = 331). Those newly diagnosed ( < 1 y) had significantly higher levels of distress (p = 0.011); increased risk for depression (p = 0.007); and more likely to be concerned about changes in work, school, or home life; body image; feeling nervous or afraid; worry about the future; and making a treatment decision (p < 0.05). Among those who indicated that an item was a concern, newly diagnosed patients were significantly more likely to want to talk to their health care team about pain; financial worries; exercising; feeling lonely or isolated; feeling nervous or afraid; and worry about the future (p < 0.05). Conclusions: These findings suggest that patients are more distressed and more likely to want to talk about their psychosocial needs within the first year of a cancer diagnosis. Future research should evaluate efforts to provide tailored resources within the first year of a diagnosis when distress levels are highest.

A Behavior-Modification, Clinical-Grade Mobile Application to Improve Breast Cancer Survivors' Accountability and Health Outcomes

2018 ◽  
pp. 1-11 ◽  
Author(s):  
Renee Stubbins ◽  
Tiancheng He ◽  
Xiaohui Yu ◽  
Mamta Puppala ◽  
Chika F. Ezeana ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Cancer Survivors ◽  
Behavior Modification ◽  
Technology Use ◽  
Breast Cancer Survivors ◽  
Health Care Team ◽  
Care Team ◽  
Feasibility Trial ◽  
System Usability Scale

Purpose Only 34% of breast cancer survivors engage in the recommended level of physical activity because of a lack of accountability and motivation. Methodist Hospital Cancer Health Application (MOCHA) is a smartphone tool created specifically for self-reinforcement for patients with cancer through the daily accounting of activity and nutrition and direct interaction with clinical dietitians. We hypothesize that use of MOCHA will improve the accountability of breast cancer survivors and help them reach their personalized goals. Patients and Methods Women with stages I to III breast cancer who were at least 6 months post–active treatment with a body mass index (BMI) greater than 25 kg/m2 were enrolled in a 4-week feasibility trial. The primary objective was to demonstrate adherence during weeks 2 and 3 of the 4-week study period (14 days total). The secondary objective was to determine the usability of MOCHA according to the system usability scale. The exploratory objective was to determine weight loss and dietitian-participant interaction. Results We enrolled 33 breast cancer survivors who had an average BMI of 31.6 kg/m2. Twenty-five survivors completed the study, and the average number of daily uses was approximately 3.5 (range, 0 to 12) times/day; participants lost an average of 2 lbs (+4 lbs to −10.6 lbs). The average score of usability (the second objective) was 77.4, which was greater than the acceptable level. More than 90% of patients found MOCHA easy to navigate, and 84% were motivated to use MOCHA daily. Conclusion This study emphasizes the importance of technology use to improve goal adherence for patients by providing real-time feedback and accountability with the health care team. MOCHA focuses on the engagement of the health care team and is integrated into clinical workflow. Future directions will use MOCHA in a long-term behavior modification study.

Discriminatory power of a 25-item distress screening tool CancerSupport Source: A cross-sectional study of 251 cancer survivors.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9599-9599
Author(s):  
Melissa F Miller ◽  
C. Daniel Mullins ◽  
Ebere Onukwugha ◽  
Christopher Gayer ◽  
Mitch Golant ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Screening Tool ◽  
Psychosocial Care ◽  
Summary Score ◽  
Discriminatory Power ◽  
Support Network ◽  
Distress Screening ◽  
Cross Sectional ◽  
Study Objective ◽  
Cancer Support

9599 Background: Distress screening and integrated psychosocial care is imperative for cancer patients, yet no tools are specifically tailored for the community provider setting where the majority of US patients are treated. Any screening tool must be validated and effective at discriminating those at risk for greater distress and the associated poorer health outcomes. The study objective was to test the discriminatory power of a 25-item distress screening tool CancerSupportSource for use among cancer survivors. Methods: A total of 251 members (90% female, median age 57 years; mixed diagnoses, 46% breast, 9% gynecologic, 7% blood, 6% colorectal, 32% other) of a community-based cancer support network completed a web-based distress screening tool. Participants were asked to rate each of 25 items according to the question “Today, how concerned are you about…?” using a five-point scale (0 not at all to 4 very seriously concerned). A summary score was calculated as the count of items rated ≥2 and the item discrimination index (IDI) as the difference between proportions of high and low scorers rating an item≥2. Cut-points at 13 and 4 yielded equal-sized groups and were used to classify participants as high (n=59) and low scorers (n=60). Results: Items with the greatest discriminatory power (IDI≥0.8) were: changes or disruptions in work, school or home life; worrying about the future and what lies ahead; feeling too tired to do the things you need or want to do; feeling sad or depressed; ability to exercise or be physically active; and feeling nervous or afraid. Conversely, items with the lowest IDI included: eating and nutrition; tobacco or substance use; transportation to treatment and appointments; considering taking your own life. Conclusions: The results highlight, among 25 items of a distress screening tool, those items with the greatest discriminatory power to identify cancer survivors with psychosocial distress. Results suggest priority areas for distress screening and referral for support services.

Provider-patient communication about cost of care: Results from a national patient education program.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9578-9578 ◽  
Author(s):  
Ivy A. Ahmed ◽  
Allison Harvey ◽  
Marni Amsellem ◽  
Thomas J. Smith
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Cancer Care ◽  
Health Care Team ◽  
Cost Of Care ◽  
Care Team ◽  
Cancer Support ◽  
Support Organizations ◽  
National Patient ◽  
The Cost

9578 Background: A 2010 NIH study indicates direct cancer care expenditures will reach $158 billion in the U.S. by 2020, impacting millions of Americans. The cost of insurance for a family of 4 has increased from $6000 (2000) to over $16,000 (2011). Medical debt is a significant cause of personal bankruptcy, even if insured. The financial realities posed by costs associated with cancer care greatly complicate a cancer diagnosis. The most recent American College of Physicians Ethics Manual recommends all parties must interact honestly, openly, and fairly. (Snyder L, et al. Ann Int Med 2012, p86) This analysis explores the occurrence and value of patient-provider communication surrounding costs associated with care in a national survey of those affected by cancer. Methods: From 2011-12, 505 individuals attending Frankly Speaking About Cancer: Coping with the Cost of Care workshops completed a survey assessing experiences about the costs of cancer care. This is a Cancer Support Community national evidence-based educational program. All attendees (n=708) were eligible to complete survey. Results: Most attendees (71.3%) responded. The majority (62.4%) were people with cancer/survivors; the remainder included spouses/partners, family members, and 8.7% were health care professionals. Most (80.8%) were Caucasian, and averaged 57.2 years. Of those with cancer, 89.9% were insured at diagnosis. 59.4% reported no one on their health care team initiated a discussion about the financial aspects of their care. Included in this figure, 22.7% actively sought information from health care team, and 36.7% received no information about cost. When topic was initiated, it was by social workers (16.2%), physicians (12.3%), nurses (6.3%) or financial specialists (8.2%). When information was provided, 72.1% found it somewhat or very useful. Also, regardless of provider discussion, respondents independently sought resources for managing costs, such as other patients (44.2%), the Internet (41.5%), and patient support organizations (38.1%). Conclusions: Patients want financial information but do not receive it. These data highlight the need and value of providers initiating a dialogue about the cost of cancer care with patients.

Predictors of anxiety and depression risk among individuals with lung cancer.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23136-e23136
Author(s):  
Kevin Stein ◽  
Shauna McManus ◽  
Pierre M. Gardan ◽  
Julie S. Olson ◽  
Melissa F. Miller ◽  
...  
Keyword(s):  
Lung Cancer ◽  
Health Care ◽  
Symptom Burden ◽  
Health Care Team ◽  
Care Team ◽  
Anxiety And Depression ◽  
Team Communication ◽  
Cancer Support ◽  
Depression Risk ◽  
Clinically Significant

e23136 Background: Lung cancer (LC) patients can face long-term symptom burden, quality of life concerns, and enduring distress. This study explored predictors of psychosocial distress among a community-based sample of LC survivors. Methods: 208 individuals with LC enrolled in Cancer Support Community’s Cancer Experience Registry, provided demographic/clinical background, and reported cancer-related distress using CancerSupportSource, a 25-item tool measuring level of concern ( 0-4) over 5 domains: emotional well-being (including 2-item depression and 2-item anxiety risk screening subscales), symptom burden and impact, body image and healthy lifestyle, health care team communication (HCTC), and relationships and intimacy. Using logistic regression, we estimate which domains influence anxiety and depression risk, controlling for significant demographic/clinical variables. Results: Participants were 68% female, 83% non-Hispanic White; mean ( SD) age = 61 (11) years; mean ( SD) years since diagnosis = 3.1 (4.5); 86% non-small cell lung cancer (NSCLC); 43% ever diagnosed as metastatic. 52% underwent surgery; 76% received chemotherapy, 65% radiation. 53% were at risk for clinically significant anxiety; 42% for clinically significant depression. Concerns about relationships and intimacy were associated with greater odds of anxiety risk ( OR= 1.70; p< .01); a positive interaction suggested that anxiety risk among individuals with NSCLC varied by HCTC concerns, with greater concerns being associated with higher risk ( p< .05). Concerns about symptom burden and impact ( OR= 1.21; p< .01) and HCTC ( OR= 1.57; p< .05) were significantly associated with greater odds of depression risk; these associations did not vary by LC type. Conclusions: Concerns around health care team communication, relationships and intimacy, and symptom burden and impact are important considerations in understanding risk for anxiety and depression among lung cancer patients and survivors. Additionally, type of lung cancer (NSCLC) can moderate the degree to which concerns about HCTC are associated with risk. Findings highlight the need for constructive patient-provider communication, particularly around relationships and intimacy and symptom burden. Clinical trial information: NCT02333604.

Child Life

PEDIATRICS ◽  
1988 ◽  
Vol 81 (5) ◽  
pp. 725-726
Author(s):  
T. BERRY BRAZELTON ◽  
RICHARD H. THOMPSON
Keyword(s):  
Health Care ◽  
Nova Scotia ◽  
Health Care Team ◽  
Care Team ◽  
Child Life ◽  
First Year ◽  
Annual Conference ◽  
Child Life Specialists ◽  
Pediatric Health Care ◽  
Half Decade

This past May more than 250 members of the Child Life Council gathered in Halifax, Nova Scotia, Canada, for their annual conference and celebrated the fifth anniversary of the organization. Established in 1982 under the auspices of the Association for the Care of Children's Health, this young organization has grown steadily and now numbers nearly 700 members. In another indication of the development of the profession of child life, more than 300 individuals were granted certification as child life specialists in 1986/1987, the first year in which certification was available. As the Child Life Council enters its second half-decade, and because the profession shows additional signs of maturation, it would be wise to reflect on the contributions made by this relatively new member of the pediatric health care team.

Distress screening in cancer survivorship.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 138-138
Author(s):  
Julia P. Brockway-Marchello ◽  
Haley Hines Theroux ◽  
Sophia Tsesmelis Piccolino ◽  
Qiuchen Yang ◽  
Cardinale B. Smith
Keyword(s):  
Multivariate Analysis ◽  
Cancer Survivors ◽  
Screening Tool ◽  
Descriptive Analysis ◽  
Clinic Visit ◽  
Solid Cancer ◽  
Distress Screening ◽  
Cross Sectional ◽  
Data Set ◽  
Cancer Support

138 Background: Cancer survivors have varied physical, psychosocial, emotional and financial needs that may differ from needs of active cancer treatment patients. Distress screening identifies and monitors the needs of patients and is mandated for certain accreditations. There is a paucity of data on the application of distress screening among survivors. We used a validated distress screening tool to conduct a needs assessment of cancer survivors in solid oncology. Methods: The Cancer Support Source Distress Screening tool is an 18-item survey given on the 2nd and every 3-month clinic visit to assess depression and distress. The first analysis, merged patient data (patients completing ≥ 2) with cancer registry to identify solid cancer survivors from July 2015 to October 2018. A descriptive analysis of these patients was performed. The second analysis was cross-sectional with a larger data set of all solid tumor patients completing a survey at any time pre, during, or post treatment. We compared distress and depression scores using analysis of variance. A bivariate and multivariate analysis evaluating change in depression and distress scores over time is ongoing. Results: In analysis one, 92 patients were identified. Depression scores improved for most cancer types; distress scores improved for all cancers. Emotional, communication, provider relationship, system of care, body image and social support were associated with significant changes in survivorship concern. In the expanded dataset, 908 patients were identified. The distribution of depression and distress scores are shown in the table. There was a significant decrease for depression scores (p<.001) and distress scores (p<.001). Multivariate analysis to evaluate change in depression and distress scores across the survivorship trajectory is ongoing. Conclusions: A distress screening survey may be a useful tool in assessing the unmet needs of cancer survivors. Identifying prevalent domains of survivorship issues can highlight areas of greatest perceived need and can guide quality improvement initiatives within a cancer program. [Table: see text]

Distress screening in cancer survivorship.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 197-197
Author(s):  
Julia P. Brockway-Marchello ◽  
Haley Hines Theroux ◽  
Sophia Tsesmelis Piccolino ◽  
Qiuchen Yang ◽  
Cardinale B. Smith
Keyword(s):  
Multivariate Analysis ◽  
Cancer Survivors ◽  
Screening Tool ◽  
Patient Survey ◽  
Sociodemographic Factors ◽  
Clinic Visit ◽  
Distress Screening ◽  
Program Accreditation ◽  
Cancer Support ◽  
Cancer Program

197 Background: Cancer survivors have physical, psychosocial, emotional and financial needs that vary in prevalence and may differ from needs of patients on active cancer treatment. Distress screening is mandated for cancer program accreditation and identifies, addresses and monitors the needs of patients. There is a paucity of data on the clinical application of distress screening among survivors. We used a validated distress screening tool to conduct a needs assessment of cancer survivors in the solid oncology clinic. Methods: The Cancer Support Source Distress Screening tool is an 18-item questionnaire given to patients on their 2nd and every 3 month medical oncology clinic visit to assess depression and distress. We merged patient survey data (patients completing ≥ 2) with the cancer registry to identify cancer survivors from July 2015 to October 2018. We performed bivariate and multivariate analysis evaluating change in depression and distress scores over time. Results: 92 patients were identified. The table indicates changes in depression and distress scores by cancer. Depression scores improved for most cancer types with an improvement in distress scores across all cancers. Emotional/mental health, communication, provider relationship, system of care, body image and social support were associated with significant changes in survivorship concern. We are completing a multivariate analysis controlling for sociodemographic factors to evaluate change in depression and distress scores across the survivorship trajectory. Conclusions: A distress screening survey may be a useful tool in assessing the unmet needs of cancer survivors. Identifying prevalent domains of survivorship issues can highlight areas of greatest perceived need and can guide quality improvement initiatives within a cancer program. [Table: see text]

Cancer-related distress and unmet needs among members of a metastatic breast cancer registry.

2014 ◽  
Vol 32 (26_suppl) ◽  
pp. 118-118
Author(s):  
Joanne S. Buzaglo ◽  
Melissa F Miller ◽  
Anne Morris ◽  
Allison Harvey ◽  
Mitch Golant
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Metastatic Breast Cancer ◽  
Metastatic Breast ◽  
Health Care Team ◽  
Cost Of Care ◽  
Care Team ◽  
Comprehensive Cancer Center ◽  
Community Based ◽  
Cancer Support

118 Background: An estimated 155,000 people are living with metastatic breast cancer (MBC) in the US. Emotional distress among people living with MBC is common; yet, little is known about the patient experience and distress screening. Methods: Since March 2013, the Cancer Support Community has registered 909 people living with MBC to the Cancer Experience Registry, an online initiative that is designed to raise awareness about the psychosocial impact of cancer. 599 registrants responded to questions about cancer related distress. This sample was 99% female, 91% Caucasian, and 69% with a college degree and median age 56. Median time since MBC diagnosis was 3 years. Results: The top sources of distress (% rated seriously or very seriously concerned) were: (1) worry about the future (44%); (2) fatigue (39%); (3) health insurance or money worries (38%). 49% reported fatigue was ‘quite a bit’ or ‘very much’ disruptive in their life and 46% reported intrusive ideation about the financial cost of care. Factors that were independently associated with greater overall distress included younger age (p<0.001), higher comorbidity (p<0.001), lower income (p=0.001). 43% of respondents were never asked about distress by their health care team. Those who received all or part of their treatment in an academic or comprehensive cancer center were significantly more likely to be asked about distress versus those receiving treatment anywhere else (65% vs. 50%, p=0.002). Among those who were asked about distress (n=340), 62% received referrals to manage distress within their health care system, and 19% at a community-based organization; 47% reported their health care team helped coordinated distress-related care. 20% of those asked about distress never received referrals for managing it. Conclusions: These findings support the need for integrated supportive care services and better side-effect management. Disturbingly, 20% of patients who asked for referrals never received them and only 19% of patients were referred to community-based organizations for treating their distress where these services are often provided at low or no-cost. There is an on-going need for coordinated care that integrates programs and services across health care systems.

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