Identifying Modifiable Clinical Trial Factors to Increase Participation in Chemotherapy-Induced Peripheral Neuropathy Prevention Clinical Trials: A Choice-Based Conjoint Analysis
Primary Investigator: Robert Knoerl, PhD, RN
Co-Investigators: Jennifer Gewandter, PhD, MPH; Jennifer Ligibel, MD; Donna Berry, PhD, RN, AOCN, FAAN; Jeffrey Meyerhardt, MD, MPH, FASCO; Katherine Thornton, MD; Kaitlen Reyes, DNP; Elahe Salehi, DNP,
Funding: Rita and Alex Hillman Foundation: Hillman Alumni Advancing Early Research Opportunities
Chemotherapy-induced peripheral neuropathy (CIPN) (e.g., numbness/tingling in hands/feet) is a common dose-limiting toxicity of neurotoxic chemotherapy that may increase patients’ risk of mortality and reduce physical functioning during and years following
treatment. Yet, there is a dearth of effective CIPN prevention and treatment options. The purpose of this study is to determine modifiable clinical trial characteristics (e.g., CIPN treatment type/delivery, risks/benefits) that influence patients’
likelihood to participate in CIPN prevention clinical trials using cognitive interview and choice-based conjoint analysis methodology. We will implement an exploratory-sequential, mixed-methods approach to comprehensively identify patients’ preferences
for CIPN clinical trial participation and adherence. First, we will conduct cognitive interviews with patients experiencing CIPN symptoms (N=25) to gain feedback about the hypothesized attributes and levels that are important to patients when deciding
to participate in a CIPN clinical trial. Second, using the attributes and levels determined by the cognitive interviews, we will conduct a choice-based conjoint analysis with 84 patients experiencing CIPN symptoms to determine modifiable CIPN clinical
trial characteristics that influence patients’ likelihood to participate in CIPN prevention trials. Study results will provide evidence regarding modifiable clinical trial characteristics that may increase patients’ participation in clinical trials
focused on CIPN prevention.
Testing Feasibility of a Motivational Interviewing Intervention for Functional Cancer Pain Goals in Palliative Pain Management
Primary Investigator: Olga Ehrlich, PhD, RN, CHPN
Co-Investigators: Donna L. Berry, PhD, RN, AOCN, FAAN; Douglas Brandoff, MD
Funding: Sigma/American Nurses' Foundation
Patients with advanced cancer have high rates of moderate-to-severe pain, and a noted gap in cancer pain research is the processes of assessing and setting goals. Studies have assessed feasibility of setting personal pain goals in which participants reported
tolerable numeric pain ratings but did not report reduced pain severity. While studying pain-related social processes, Dr. Ehrlich has found that hospice patients, caregivers, and nurses alluded to functional pain goals (FPGs) through indirect talk
without directly discussing or setting FPGs for follow-up care. Because patients with cancer have described good pain days as those when functioning is normal, and functionality is associated with reduced anxiety, less fear of pain, and feeling empowered,
research into patient-reported FPGs is needed. Motivational Interviewing (MI) has been used in healthcare interventions to bring such cognitive behavioral aspects of health management into brief clinical encounters by using discussion techniques.
Applying MI in cancer pain discussions will shed light on complex reasons patients engage in pain management behaviors not consistent with clinician teaching or interventions. This pilot study will test the feasibility and acceptability of using MI
to set FPGs in a sample of 54 participants referred to ambulatory palliative care for cancer-related pain at the Dana-Farber Cancer Institute. Results will inform the planning of future studies using FPG-setting in clinical encounters for cancer pain
Yoga for Chronic Painful Chemotherapy-Induced Peripheral Neuropathy
Primary Investigator: Robert Knoerl, PhD, RN
Co-Investigators: Jennifer Ligibel, MD; Donna Berry, PhD, RN, AOCN, FAAN; Jeffrey Meyerhardt, MD, MPH, FASCO; Alexi A. Wright, MD, MPH
Funding: Oncology Nursing Foundation
Chemotherapy-induced peripheral neuropathy (CIPN) symptoms become chronically (>3 months) painful and impair physical function long after treatment completion. Decreased physical function attributed to painful CIPN is associated with an increased risk
of falls, difficulty completing daily activities, and an inability to return to work. Yet, a gap in our knowledge to date is that there are no evidence-based treatments to support physical functioning in individuals with chronic painful CIPN. The
overall objective of this pilot study is to determine the feasibility of implementing an eight-week yoga intervention to improve worst pain intensity, CIPN symptom severity, and physical function in individuals with chronic painful CIPN. We will employ
an explanatory sequential, mixed-methods design. First, we will conduct a pilot randomized-controlled trial (N = 50) to determine the feasibility of patient recruitment, retention, and adherence to an eight-week yoga program in cancer survivors with
chronic painful CIPN. Second, we will conduct semi-structured interviews to explore intervention group participants’ perspectives of acceptability and satisfaction with the yoga intervention. Participants randomized to the intervention arm will receive
therapist guided (in-person, group) and self-guided (at-home) yoga over eight weeks. The long-term goal of this research is to improve physical functioning in cancer survivors with chronic painful CIPN.
Enabling Clinical Decision Support for Guideline-Based Cancer Symptom Management
Primary Investigator: Mary Cooley, PhD, CRNP, FAAN (Site PI)
Co-Investigator: Janet Abrahm, MD
Funding: National Cancer InstituteSBIR Klesis, LLC (Lobach, PI)
The objective of this contract is to develop an EMR-integrated software product that uses national clinical practice guidelines in decision support for clinicians to manage cancer symptoms. In the 9-month phase 1 of the project (2018-19), we will convene
multidisciplinary panels of clinician experts to develop computable algorithms for cancer related fatigue and constipation; conduct formative usability testing with clinicians and patients using screen prototypes; and determine the software requirements
to deliver decision support at the point of care. Dr. Cooley and her collaborators at Dana-Farber and Partners Health Care are the research institution partners in this SBIR with medical informatics colleagues led by Dr. David Lobach of Klesis, LLC
as the business partner.
Exploring the Feasibility of a Mindfulness-Music Intervention to Reduce Anxiety in Adolescents and Young Adults Receiving Cancer Treatment
Primary Investigator: Robert Knoerl, PhD, RN
Co-Investigators: Jennifer Ligibel, MD; Ann LaCasce, MD, MMSc; Lindsay Frazier, MD; Katherine Thornton, MD; Marlise Luskin, MD, MSCE, Heather Woods, MT-BC; Elizabeth Buchbinder, MD; Donna Berry, PhD,
RN, AOCN, FAAN
Approximately 70,000 adolescents and young adults (AYAs) (15 – 39 years old) are diagnosed with cancer each year. AYAs with cancer face unique challenges. These patients experience psychosocial stressors due to disruptions in age-related developmental
tasks such as education/career plans, autonomy from parents, and family planning. AYAs with cancer experience significant anxiety and stress due due to disruptions in age-related developmental tasks such as education/career plans, autonomy from parents,
and family planning. However, little is known regarding optimal interventions to support the psychosocial needs of AYAs during cancer treatment. The long-term goal of this research is decrease suffering in AYAs with cancer by addressing the critical
need for integrative interventions to support the psychosocial needs of AYAs during cancer treatment. In pursuit of this goal, the overall objective of this pilot, longitudinal, pre/posttest study is to examine the feasibility of implementing a mindfulness-music
therapy intervention to improve anxiety and stress in AYAs undergoing cancer treatment. The intervention consists of four individual, in-person sessions (45 minutes) over twelve weeks. The purpose of the initial session is to introduce the participant
to the principles of music therapy and how they may integrate mindfulness-music practices during their cancer treatment to enhance relaxation. During each subsequent session, the music therapist will review the principles of music-based meditation
and lead participants in a hands-on music making activity (e.g., hand chimes, drumming). The therapist will also encourage participants to practice the music mediation principles they learned in class in between the sessions using their own personal
music or music provided to them by the music therapist.
Patient reported outcomes in individuals living with familial pancreatic cancer
Principal Investigator: Meghan Underhill, PhD, APRN, AOCNS
Co-Investigators: Sapna Syngal, MD, MPH; Jannette Lawrence, CGC (MGH)
Funding: Mittleman Family Fund, KL2cMerit KL2 TR001100 Harvard Catalyst
There is a subpopulation of persons living with high risk for pancreatic cancer due to hereditary or familial factors. Though it is known that identifying pancreatic cancer at an earlier stage can lead to improved surgical treatment outcomes, no standard
of care exists to guide clinicians with surveillance or prevention. The Dana-Farber Cancer Institute (DFCI) Gastrointestinal (GI) Genetics and Cancer Prevention Program is testing mechanisms to identify and screen individuals at high risk for pancreatic
cancer. This is a cross-sectional survey study aimed at describing participant outcomes and the relationships between demographic and personal factors (age, gender, family history, cancer risk perception, cancer worry, PROMIS Social Support scale)
and psychosocial outcome measure scores (PROMIS Global Health and Health Belief Model, and Impact of Event scales) and engagement in self-care or wellness behaviors
(i.e., yoga, medication, mindfulness, acupuncture, massage, psychotherapy, support group attendance, healthy lifestyle choices, and engaging in cancer screening).
Engaging patients to improve the process of cancer genetic counseling for multi-gene panel testing
Principal Investigators: Meghan Underhill, PhD, APRN
Co-Investigators: Jill Stopfer, MS, LCGC; Anu Chittenden, MS, LCGC; Judy Garber, MD, MPH; Daniel Gundersen, PhD
Funding: Friends of Dana-Farber Cancer Institute
Advances in cancer genetics are revolutionizing the way care is delivered to patients with cancer, and increasingly to those with identifiable genetic risk for cancer. Historically, genetic testing for breast and ovarian cancer risk was done most commonly
for two genes, BRCA1 and BRCA2, which confer dramatically increased risks for both breast and ovarian cancer. Advances in genetics have now included the identification of many additional genes, some of which confer a more modest degree of cancer risk.
Improvements in laboratory techniques have made it possible to test many genes at once, known as multi-gene panel testing. Multi-gene panel testing is now routinely offered as part of clinical care. This represents a paradigm shift in the way genetic
counseling and testing is offered, and one in which once again, Dana-Farber has an opportunity to lead a study that will shape the future model of cancer genetic counseling in clinical care. The aim of this project is to evaluate patient reported
knowledge, risk perception, psychological impact and acceptability of genetic counseling and testing experience, health behavior intentions, and family communication in individuals with breast or gynecological cancer who have undergone genetic counseling
and testing for multi-gene panel testing in the past 12 months utilizing mixed qualitative and quantitative methods.
The long-term goal of this project is to apply patient reported experiences to inform the development of improved practice models in cancer genetics care that could dramatically change the way services are offered at DFCI and serve as a national service
Development and evaluation of an educational website for Hodgkin lymphoma survivors
Principal Investigator: Meghan Underhill, PhD, APRN
Co-Investigators: Donna Berry, PhD, RN, FAAN; Ann Partridge, MD, MPH
Funding: Oncology Nursing Society Foundation
There are currently approximately 200,000 survivors of Hodgkin Disease (HD), also known as Hodgkin Lymphoma, living in the United States, and the American Cancer Society reports that in 2016 there will be 8,500 new cases. HD affects both men and women
across all ages, occurring most frequently in early adults ages 15 to 40 and in a cohort of individuals in late adulthood. Over half (56 percent) of patients are diagnosed with localized or regional disease and have a 5 and 10-year survival rate of
91 percent and 80 percent respectively. Even if diagnosed with stage III or IV HD 5-year survival rates are as high as 65 to 80 percent. Therefore, many individuals are now living as cancer survivors with HD and are at risk for long-term and late
effects from their cancer and cancer treatments. Individuals with these cancer and treatment related risks are recommended to care for themselves differently than individuals from the general population. In 2005 the Institute of Medicine published
a seminal report indicating the relevance of survivorship care needs to public health. This report aimed to charge health scientists, practitioners, and consumers to be aware of survivorship care needs and address those needs through quality research
and practice change. Since then, cancer survivorship has been prioritized and incorporated into the care of most major academic cancer centers. Despite this shift in survivorship care, survivors of HD still report not receiving adequate survivorship
information, support, and care. Survivorship needs of HD survivors are complex, multifactorial, unique to everyone, and often changing. Providing HD survivors with knowledge and tools for survivorship self-care and follow-up medical care can be a
powerful adjunct to clinical services. The study aims to build on our preliminary development work to engage key patient and provider stakeholders
to develop a comprehensive psychoeducational intervention for HD survivors through a user-centered design framework.
Implementing a systems-level tobacco treatment intervention into a thoracic oncology program
Principal Investigator: Mary Cooley, PhD, RN, FAAN
Co-Investigators: Raphael Bueno, MD; Jonathan Winickoff, MD
Funding: Dana-Farber/Harvard Cancer Center Nodal Award
This research initiative creates opportunities for investigators from various disciplines to collaborate across disease programs with the Dana-Farber Harvard Cancer Center. The aims for this project are to adapt and implement a systems-level tobacco treatment
intervention within the Lung Center at Brigham and Women’s Hospital, compare the effectiveness of the systems-level tobacco treatment intervention with usual care, and create a population-based tobacco use data base that can be integrated with a biological
data-base for future studies.
A Brief Behavioral Intervention for Dyspnea in Patients with Advanced Lung Cancer
Principal Investigator: Mary Cooley, PhD, RN, FAAN (Site PI) (PI: Joseph Greer, PhD, Massachusetts General Hospital)
Co-Investigators: Jennifer Temel, MD; Colleen Channick, MD; William Pirl, MD, MPH
Dyspnea is a common symptom in patients with advanced lung cancer and is associated with worse quality of life and greater use of health care services. We designed a brief, nurse-delivered two-session behavioral intervention that focuses on skills for
managing dyspnea including patient education, relaxation techniques, and behavioral strategies for acute dyspnea. The intervention improved patients’ dyspnea and quality of life in a single arm pilot study, and we are now testing the intervention
versus usual care in a randomized trial (N=200) at Massachusetts General Hospital and Dana-Farber. Participants complete study questionnaires at baseline and every 8 weeks for 6 months as well as wear a wrist actigraph for 3 days at baseline and post-intervention.
Outcomes in the study include dyspnea, functional status, and quality of life.
Evaluating a Clinician Support Algorithm to Enhance Implementation of Evidence-Based Chemotherapy-Induced Peripheral Neuropathy Assessment and Management Recommendations
Principal Investigator: Robert Knoerl, PhD, RN
Co-Investigators: Jennifer Ligibel, MD; Kaitlen Reyes, DNP; Nadine McCleary, MD; Donna Berry, PhD, RN, AOCN, FAAN (mentor)
Funding: Mittleman Family Fund
Chemotherapy-induced peripheral neuropathy (CIPN) is a common toxicity of neurotoxic cancer treatment that may affect up to 68 percent of patients during and in the subsequent months following treatment. It is characterized by numbness, tingling, and
neuropathic pain in the extremities. Unmanaged CIPN symptoms may result in increased health care expenses, falls, and reductions in neurotoxic chemotherapy dose. Yet, CIPN symptoms remain inadequately assessed and managed in clinical practice. Novel
interventions are needed that increase the early identification and management of CIPN symptoms to prevent the resulting negative effects of unmanaged CIPN symptoms on patient outcomes. Thus, the purpose of this study is to test the efficacy of a
CIPN assessment and management algorithm to promote the implementation of evidence-based CIPN assessment and management recommendations in clinicians caring for patients receiving neurotoxic chemotherapy. This study employs a prospective, two-phase,
pre/post-test design. We will prospectively recruit 142 patients beginning neurotoxic chemotherapy (71 Usual Care (UC) Period; 71 CIPN Algorithm Period (A-CIPN)) and 50 clinicians providing care to these patients at Dana-Farber Cancer Institute. In
the UC phase, patient participants will complete a battery of CIPN patient reported outcome measures over three clinical visits. In the A-CIPN phase, a separate cohort of patients will be recruited and will complete the same battery of CIPN patient
reported outcome measures over three clinical visits. However, in the A-CIPN phase, clinicians will use the CIPN assessment and management algorithm to guide their assessment and management of CIPN during the visits. Clinician documentation of CIPN
assessment and management will be compared between the two study phases. The long-term goal of this research is to decrease patient suffering by addressing the critical need for improved clinical systems to facilitate increased CIPN assessment and
management in practice.
Cancer Awareness and Needs in Persons with High Risk for Hereditary Breast and Ovarian cancer from underserved communities
Principal Investigator: Meghan Underhill, PhD, APRN, AOCNS
Co-Investigators: Karleen Habin, RN, MS; Kristen Shannon, MS, LGC; Jean Boucher, PhD, APRN; Kathryn Robinson, RN, MS
Dr. Underhill has partnered with the Cancer Resource Foundation to understand the needs of individuals receiving genetic testing in underserved communities. The aims of the work are to understand needs for health promotion and wellness intervention in this high risk underserved population as well as characterize the population served. Information gained from this work will guide future community based intervention development.
myCare2 Supporting Caregivers and Caregiving
Principal Investigator: Donna Berry, PhD, RN, FAAN (Site PI)
Funding: National Cancer Institute, SBIR Bright Outcomes (Haas, PI)
Cancer caregivers are often not included as central by the health care team to the management of patients, yet are most responsible at home. We have leveraged conceptual features of the ESRA-C system and features of BrightOutcome’s SymptomCareAnywhere
and MyCaringCircle systems to create a new system, myCare2, that aims to meet the needs of individuals who care for cancer patients. The DFCI clinical site has conducted all focus groups and individual interviews to develop the
The Experience of Living with Inherited Pancreatic Cancer Risk and Undergoing Pancreatic Cancer Screening
Principal Investigator: Meghan L. Underhill, PhD, RN
Co-Investigators: Sapna Syngal, MD, MPH; Emily Brown, MS, LGC; Anu Chittenden, MS, LGC; Monica Dandipani, MS, LGC; Chinedu Ukaegbu, MBBS, MPH; Denisa Paris; Rhonda Grealish, RN; Donna Berry, PhD, RN,
AOCN, FAAN (mentor)
Significance: There is a subpopulation of persons living with high risk for pancreatic cancer due to hereditary or familial factors. Though it is known that identifying pancreatic cancer at an earlier stage can lead to improved surgical
treatment outcomes, no standard of care exists to guide clinicians with surveillance or prevention. The Dana-Farber Cancer Institute (DFCI) Gastrointestinal (GI) Genetics and Cancer Prevention Program is testing mechanisms to identify and screen individuals
at high risk for pancreatic cancer.
Specific Aims: Aims are to: (a) Understand the meaning of living with awareness of high risk for inherited or familial pancreatic cancer; and (b) explore experiences associated with pancreatic
screening as part of a comprehensive cancer prevention program.
Method: This study is a descriptive, cross-sectional study design guided by a qualitative phenomenological approach. A convenience sample will be recruited from the DFCI GI Cancer Prevention Program.
Eligible participants will meet criteria to undergoing pancreatic cancer screening based on personal and family cancer history and have no history of pancreatic cancer. An open ended one on one interview will be completed with each participant by
the nurse researcher. Analysis will be led by the nurse research and will utilize a content analysis method to identify patterns, consistencies and differences noted throughout the interviews.
Implications for Nursing: This study
will guide future nursing research and practice by guiding the development of patient oriented nursing and health care provider interventions aimed at improving the experience of individuals undergoing pancreatic cancer detection and risk identification.
Enhancing Usability of the Personal Patient Profile-Prostate (P3P) for Black and Spanish-speaking Men
Principal Investigator: Donna L. Berry, PhD, RN, AOCN, FAAN
Co-Investigators: Julia Wetmore-Hayes, MD (DFCI); Martin Sanda, MD (BIDMC/Emory); Peter Chang, MD (BIDMC); Seth Wolpin, PhD, RN (University of Washington)
Significance: Localized prostate cancer (LPC) can be treated with one or more of several modalities including active surveillance, surgery, cryosurgery, brachytherapy, external beam radiation therapy or androgen deprivation therapy. There
are few findings from randomized trials of these treatment modalities in North American settings that adequately compare survival or adverse outcomes such as erectile, bladder, and bowel dysfunction. There is a growing body of evidence that men with
a recent diagnosis of LPC engage in the treatment decision making process by strongly considering their personal characteristics and factors along with medical factors. The incidence of prostate cancer is higher in Black men in the United States than
any other ethnic or racial group, plus death rates are disproportionately higher for these men. While there are few factors to explain these discrepancies, certainly Black men carry an additional burden when making treatment decisions. Hispanics are
the fastest-growing minority group in the US. According to the 2009 Healthcare Disparities Report, Hispanic adults reported worse provider-patient communication than non-Hispanic Whites, likely creating barriers to informed and shared LPC treatment
Aim: The aim is to improve the a) ethnic and racial sensitivity and applicability; and b) linguistic, technical and contextual appropriateness of P3P content and measures.
Personal Patient Profile-Prostate: Testing and Implementation in Health Networks
Principal Investigator: Donna L. Berry, PhD, RN, AOCN, FAAN
Co-Investigators: Julia Hayes, MD (DFCI); Fangxin Hong, PhD (DFCI); Seth Wolpin, PhD, RN (U. Washington); Leslie Wilson, PhD (UCSF), Steven Canfield, MD (University of Texas Health Science Center at Houston);
Gary Chien, MD (Kaiser Permanente), Martin Sanda, MD (Emory University); Peter Chang, MD (Beth Israel Deaconess Medical Center)
The P3P is the first automated and tailored intervention for men with localized prostate cancer (LPC) to demonstrate efficacy in a U.S. sample. We have evidence that the P3P decreases decisional conflict; men are able to, in their words, “choose the best
treatment for me.” Yet as with many decision support technologies and interventions, deployment as an integral component of cancer clinical care has not been established, notably with regard to feasibility as routine practice and to costs. LPC can
be treated with one or more modalities including observation alone, surgery, cryosurgery, hormonal therapy, brachytherapy, or external beam radiation therapy. There are few findings from randomized studies of these treatment modalities in North American
settings that adequately compare the complications of sexual, bladder, and bowel dysfunction. For many years to come, men will hear clinician recommendations but also will be asked to make major choices about prostate cancer treatments. These decisions
can dramatically change men’s lives. The purpose of this hybrid effectiveness-implementation study is to deploy and evaluate an efficacious, patient-centered, treatment decision technology in geographically, ethnically and racially diverse health
care settings as a means to support men with newly diagnosed LPC. We will collect resource costs associated with preparation for the treatment decision using the P3P program versus standard practice. Metrics associated with viability of P3P implementation
will be collected in each of three health network settings which serve a diverse population of men with prostate cancer.
Feasibility and Acceptability of a Lifestyle Intervention for Patients Receiving Surgical Treatment for Lung Cancer (Healthy Directions After Lung Cancer Pilot)
Principal Investigator: Mary E. Cooley, PhD, RN
Co-Investigators: Karen Emmons, PhD (DFCI), Christopher Lathan, MD (DFCI), Paul Marcoux, MD (DFCI), Fangxin Hong, PhD (DFCI), Dawn L. DeMeo, MD, PhD (BWH), Laura L . Hayman , PhD, RN (UMB); Raphael Bueno,
The objective of this proposal is to test the feasibility and acceptability of a multi-risk factor lifestyle intervention for patients with lung cancer receiving surgical treatment that focuses on exploring the individuals’ meaning of illness and their
wellness vision, improving symptom control, reducing lifestyle risk factors, increasing motivation to reduce risk factors, improving self efficacy, and providing social support during the transition from acute care to the recovery phase of illness.
This study will provide the preliminary data needed to conduct a larger randomized controlled trial that tests an innovative, multidisciplinary intervention that has the potential to transform the standard of care for patients receiving surgical treatment
for lung cancer. In addition, we will establish whether patients are willing to have blood collected at baseline and 4 month to assess the variability of longitudinal changes in DNA methylation with multiple behavioral risk scores. Patients will have
the option to enroll in this portion of the study. Participation in this portion of the protocol is voluntary and does not preclude participating in the parent study.
Decision Support for Symptom and Quality of Life Management
Principal Investigator: Mary E. Cooley, PhD, RN
Co-Investigators: Janet Abrahm , MD (DFCI); Donna Berry, PhD (DFCI); Ilana Braun, MD (DFCI); Erica L. Mayer, MD (DFCI-Faulkner), Lauren Petrillo-DeLuca, PA (DFCI-Milford), Brendan McNulty, MD (DFCI-Milford),
Naeem Tahir, MD (DFCI-Milford), Mona Kaddis, MD (DFCI-Milford); Michael Rabin, MD (DFCI)
Optimal patient care and clinician decision-making requires integration of patient values, goals and preferences for care decisions surrounding treatment for cancer. Integration of patient-preferences for merging symptom and quality of life (SQL) information
with medical outcomes (e.g., survival & tumor response) has not been thoroughly explored, especially in the context of treatment for cancer. Evidence exists that communication surrounding these critical values is not routinely integrated into care.
Although 95% of patients with cancer reported that they valued quality of life as much as length of survival, only 28% reported that changes in quality of life during treatment for cancer were discussed with their clinicians. The use of decision support
for SQL assessment and management may be an innovative way to enhance patient-engagement, facilitate communication and improve patient-desired outcomes. The proposed project builds on the work conducted by our team related to implementing decision
support for SQL assessment and management into clinical care. We have conducted the first large-scale randomized trial to examine the impact of SQL assessment with feedback and patient coaching on patient-clinician communication and the first study
to develop complex web-based decision support for management of pain, depression, anxiety, fatigue and dyspnea. We seek to adapt our approaches to new environments, which include community settings, and to optimize the delivery of SQL information.
We have engaged a team composed of clinicians, patient advocates, nurse scientists, informaticists and clinical decision support experts. We will elicit patient and clinician preferences through focus group methodology in year 1. Based on this information,
we will develop and test prototypes for SQL data provision and processing plus decision support strategies that can be used to enhance communication and management of SQL information.