Publications by authors named "Laurel Northouse"

78 Publications

Symptom distress and quality of life among Black Americans with cancer and their family caregivers.

Psychooncology 2021 Apr 2. Epub 2021 Apr 2.

School of Nursing, University of Michigan, Ann Arbor, Michigan, USA.

Objective: Black Americans are disproportionately affected by cancer and chronic diseases. Black patients with cancer and their family caregivers may concurrently experience symptoms that influence their wellbeing. This study investigates the influence of mental and physical symptom distress on quality of life (QOL) among Black Americans with cancer and their family caregivers from a dyadic perspective.

Methods: One hundred and fifty-one dyads comprised of a Black American with breast, colorectal, lung or prostate cancer and a Black family caregiver were included in this secondary analysis of pooled baseline data from three studies. Self-reports of problems managing 13 symptoms were used to measure mental and physical symptom distress. Descriptive statistics and the actor-partner interdependence model were used to examine symptom prevalence and the influence of each person's symptom distress on their own and each other's QOL.

Results: Fatigue, sleep problems, pain and mental distress were prevalent. Patients and caregivers reported similar levels of mental distress; however, patients reported higher physical distress. Increased patient mental distress was associated with decreased patient QOL (overall, emotional, social, functional). Increased patient physical distress was associated with decreased patient QOL (overall, physical, emotional, functional) and decreased caregiver emotional wellbeing. Increased caregiver mental distress was associated with decreased caregiver QOL (overall, emotional, social, functional) and decreased patient overall QOL. Increased caregiver physical distress was associated with decreased caregiver QOL (overall, physical, functional), decreased patient emotional wellbeing, and better patient social wellbeing.

Conclusions: Supporting symptom management in Black patient/caregiver dyads may improve their QOL.
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http://dx.doi.org/10.1002/pon.5691DOI Listing
April 2021

Moderators of the effect of psychosocial interventions on fatigue in women with breast cancer and men with prostate cancer: Individual patient data meta-analyses.

Psychooncology 2020 11 3;29(11):1772-1785. Epub 2020 Sep 3.

Department of Epidemiology and Biostatistics, Amsterdam Public Health Research Institute, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.

Objective: Psychosocial interventions can reduce cancer-related fatigue effectively. However, it is still unclear if intervention effects differ across subgroups of patients. These meta-analyses aimed at evaluating moderator effects of (a) sociodemographic characteristics, (b) clinical characteristics, (c) baseline levels of fatigue and other symptoms, and (d) intervention-related characteristics on the effect of psychosocial interventions on cancer-related fatigue in patients with non-metastatic breast and prostate cancer.

Methods: Data were retrieved from the Predicting OptimaL cAncer RehabIlitation and Supportive care (POLARIS) consortium. Potential moderators were studied with meta-analyses of pooled individual patient data from 14 randomized controlled trials through linear mixed-effects models with interaction tests. The analyses were conducted separately in patients with breast (n = 1091) and prostate cancer (n = 1008).

Results: Statistically significant, small overall effects of psychosocial interventions on fatigue were found (breast cancer: β = -0.19 [95% confidence interval (95%CI) = -0.30; -0.08]; prostate cancer: β = -0.11 [95%CI = -0.21; -0.00]). In both patient groups, intervention effects did not differ significantly by sociodemographic or clinical characteristics, nor by baseline levels of fatigue or pain. For intervention-related moderators (only tested among women with breast cancer), statistically significant larger effects were found for cognitive behavioral therapy as intervention strategy (β = -0.27 [95%CI = -0.40; -0.15]), fatigue-specific interventions (β = -0.48 [95%CI = -0.79; -0.18]), and interventions that only targeted patients with clinically relevant fatigue (β = -0.85 [95%CI = -1.40; -0.30]).

Conclusions: Our findings did not provide evidence that any selected demographic or clinical characteristic, or baseline levels of fatigue or pain, moderated effects of psychosocial interventions on fatigue. A specific focus on decreasing fatigue seems beneficial for patients with breast cancer with clinically relevant fatigue.
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http://dx.doi.org/10.1002/pon.5522DOI Listing
November 2020

Genetic Testing and Surveillance of Young Breast Cancer Survivors and Blood Relatives: A Cluster Randomized Trial.

Cancers (Basel) 2020 Sep 5;12(9). Epub 2020 Sep 5.

School of Public Health, University of Michigan, Ann Arbor, MI 48109-5618, USA.

We compared a tailored and a targeted intervention designed to increase genetic testing, clinical breast exam (CBE), and mammography in young breast cancer survivors (YBCS) (diagnosed <45 years old) and their blood relatives. A two-arm cluster randomized trial recruited a random sample of YBCS from the Michigan cancer registry and up to two of their blood relatives. Participants were stratified according to race and randomly assigned as family units to the tailored ( = 637) or the targeted ( = 595) intervention. Approximately 40% of participants were Black. Based on intention-to-treat analyses, YBCS in the tailored arm reported higher self-efficacy for genetic services ( = 0.0205) at 8-months follow-up. Genetic testing increased approximately 5% for YBCS in the tailored and the targeted arm ( ≤ 0.001; < 0.001) and for Black and White/Other YBCS ( < 0.001; < 0.001). CBEs and mammograms increased significantly in both arms, 5% for YBCS and 10% for relatives and were similar for Blacks and White/Others. YBCS and relatives needing less support from providers reported significantly higher self-efficacy and intention for genetic testing and surveillance. Black participants reported significantly higher satisfaction and acceptability. Effects of these two low-resource interventions were comparable to previous studies. Materials are suitable for Black women at risk for hereditary breast/ovarian cancer (HBOC).
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http://dx.doi.org/10.3390/cancers12092526DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7563571PMC
September 2020

Enhancing survivorship care planning for patients with localized prostate cancer using a couple-focused web-based, mHealth program: the results of a pilot feasibility study.

J Cancer Surviv 2021 Feb 17;15(1):99-108. Epub 2020 Jul 17.

School of Nursing, University of North Carolina (UNC), Carrington Hall, Chapel Hill, NC, 27599-7460, USA.

Purpose: To examine the feasibility of an enhanced survivorship care plan (ESCP) that integrated the web-based program Patient Education Resources for Couples (PERC) into a standardized survivorship care plan (SCP) and estimated the outcomes of ESCPs versus SCPs.

Methods: In this randomized pilot trial, localized prostate cancer (PC) patients and partners (i.e., couple) were randomly assigned to ESCP that contained a link to PERC or to SCP that contained a link to general PC information on the National Cancer Institute website. Couples completed assessments measuring quality of life (QOL), appraisal of symptoms, and coping resources at baseline (T1) and 4-6 months later (T2). We examined feasibility (e.g., recruitment and retention) using descriptive statistics. Linear mixed models examined changes in couples' outcomes over time and Poisson regression examined differences in patient healthcare utilization.

Results: Sixty-two couples completed T1 surveys (recruitment rate 41.6%) and were randomly assigned to receive ESCP (n = 31) or SCP (n = 31). Twenty-eight (ESCP) and 25 (SCP) couples completed T2 surveys (retention rates = 90.3% vs. 80.7%). ESCP participants (70%) reviewed webpages consistent with patients' symptoms. ESCP patients reported greater program satisfaction (p = 0.02) and better urinary symptom scores (p < 0.01) than SCP patients.

Conclusions: Delivering ESCPs that embed a web-link to a couple-focused, tailored program is feasible and can potentially improve patient outcomes. The promising results need to be validated in a larger definitive trial using a diverse sample.

Implications For Cancer Survivors: SCPs, enhanced using a web-based intervention (e.g., PERC), may help PC cancer survivors better manage their urinary symptoms.

Trial Registration: ClinicalTrials.gov identifier: NCT04350788.
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http://dx.doi.org/10.1007/s11764-020-00914-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7855003PMC
February 2021

Acceptability of a Dyadic Psychoeducational Intervention for Patients and Caregivers.

Oncol Nurs Forum 2020 05;47(3):342-351

University of Michigan.

Purpose: To assess participants' acceptability of the FOCUS program, a psychoeducational intervention, delivered to multiple patient-caregiver dyads in a small-group format.

Participants & Setting: A total of 72 adults diagnosed with cancer and their caregivers (36 dyads) who participated in 1 of 11 FOCUS programs delivered at two Cancer Support Community affiliates.

Methodologic Approach: A pre-/postintervention design was used to implement the FOCUS program. The FOCUS Satisfaction Instrument measured participants' satisfaction with the program, usefulness of the materials, helpfulness in coping with cancer, duplication of services, willingness to recommend the program to others, and the most and least beneficial aspects. Descriptive statistics, t tests, and content analysis were used.

Findings: Most participants reported that the program did not duplicate services, that it helped them cope with cancer, and that they would recommend the program to others. The most beneficial aspects of the program were the group format and the dyadic approach.

Implications For Nursing: A group format and dyadic approach to address the psychosocial impact of cancer is highly valued by individuals with cancer and their caregivers. Nurses are well positioned to lead implementation of programs like the FOCUS program that complement other cancer support services.
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http://dx.doi.org/10.1188/20.ONF.342-351DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7396201PMC
May 2020

Psychometric properties of the FACT-G quality of life scale for family caregivers of cancer patients.

Qual Life Res 2020 Aug 3;29(8):2241-2252. Epub 2020 Apr 3.

School of Nursing, University of Michigan-Ann Arbor, Ann Arbor, MI, USA.

Purpose: This study aimed to examine psychometric properties of a caregiver version of the well-established Functional Assessment of Cancer Therapy-General Scale (FACT-G) after conducting focus groups and obtaining expert input.

Methods: We made minor wording modifications to the Patient FACT-G to enable caregivers to report how the illness affected their overall quality of life (QOL) and well-being on four subscales (physical, social, emotional, functional). We tested the acceptability, precision, factor structure, reliability and validity of the Caregiver FACT-G among partners of prostate cancer patients (N = 263) and caregivers (spouses, siblings, adult children) of patients with advanced cancer (breast, lung, colorectal, prostate) (N = 484) using data from two Randomized Clinical Trials (RCTs).

Results: With a factor structure similar to the Patient FACT-G, Caregiver FACT-G was acceptable and precise in measuring caregiver QOL, with high inter-factor correlations and internal consistency reliability (Cronbach's alphas 0.81-0.91). The Caregiver FACT-G had strong convergent validity demonstrated by significant positive correlations with caregiver self-efficacy (0.25-0.63), dyadic communication (0.18-0.51), and social support (0.18-0.54) in both samples. It also had strong discriminant validity evidenced by significant inverse correlations with negative appraisal of caregiving (- 0.37 to - 0.69), uncertainty (- 0.28 to - 0.53), hopelessness (- 0.25 to - 0.60), and avoidant coping (- 0.26 to - 0.58) in both samples. Caregivers' baseline FACT-G scores were significantly associated with their physical (0.23) and mental well-being (0.54; 4-month follow-up) and their depression (- 0.69; 3-month follow-up), indicating strong predictive validity.

Conclusion: This is the first study evaluating the psychometric properties of the Caregiver FACT-G. More psychometric testing is warranted, especially among caregivers of diverse sociocultural backgrounds.
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http://dx.doi.org/10.1007/s11136-020-02477-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7363734PMC
August 2020

Challenges and Opportunities for Cancer Predisposition Cascade Screening for Hereditary Breast and Ovarian Cancer and Lynch Syndrome in Switzerland: Findings from an International Workshop.

Public Health Genomics 2018 29;21(3-4):121-132. Epub 2019 Jan 29.

Institute of Nursing Science, Department of Public Health, University of Basel, Basel, Switzerland,

Background: An international workshop on cancer predisposition cascade genetic screening for hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) took place in Switzerland, with leading researchers and clinicians in cascade screening and hereditary cancer from different disciplines. The purpose of the workshop was to enhance the implementation of cascade genetic screening in Switzerland. Participants discussed the challenges and opportunities associated with cascade screening for HBOC and LS in Switzerland (CASCADE study); family implications and the need for family-based interventions; the need to evaluate the cost-effectiveness of cascade genetic screening; and interprofessional collaboration needed to lead this initiative.

Methods: The workshop aims were achieved through exchange of data and experiences from successful cascade screening programs in the Netherlands, Australia, and the state of Ohio, USA; Swiss-based studies and scientific experience that support cancer cascade screening in Switzerland; programs of research in psychosocial oncology and family-based studies; data from previous cost-effectiveness analyses of cascade genetic screening in the Netherlands and in Australia; and organizational experience from a large interprofessional collaborative. Scientific presentations were recorded and discussions were synthesized to present the workshop findings.

Results: The key elements of successful implementation of cascade genetic screening are a supportive network of stakeholders and connection to complementary initiatives; sample size and recruitment of relatives; centralized organization of services; data-based cost-effectiveness analyses; transparent organization of the initiative; and continuous funding.

Conclusions: This paper describes the processes and key findings of an international workshop on cancer predisposition cascade screening, which will guide the CASCADE study in Switzerland.
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http://dx.doi.org/10.1159/000496495DOI Listing
September 2019

Disparities in genetic services utilization in a random sample of young breast cancer survivors.

Genet Med 2019 06 2;21(6):1363-1370. Epub 2018 Nov 2.

Nursing Science, Faculty of Medicine, University of Basel, Basel, Switzerland.

Purpose: Increasing use of genetic services (counseling/testing) among young breast cancer survivors (YBCS) can help decrease breast cancer incidence and mortality. The study examined use of genetic services between Black and White/Other YBCS, attitudes and knowledge of breast cancer risk factors, and reasons for disparities in using genetic services.

Methods: We used baseline data from a randomized control trial including a population-based, stratified random sample of 3000 potentially eligible YBCS, with oversampling of Black YBCS.

Results: Among 883 YBCS (353 Black, 530 White/Other) were significant disparities between the two racial groups. More White/Other YBCS had received genetic counseling and had genetic testing than Blacks. Although White/Other YBCS resided farther away from board-certified genetic counseling centers, they had fewer barriers to access these services. Black race, high out-of-pocket costs, older age, and more years since diagnosis were negatively associated with use of genetic services. Black YBCS had lower knowledge of breast cancer risk factors. Higher education and genetic counseling were associated with higher genetic knowledge.

Conclusion: Racial inequalities of cost-related access to care and education create disparities in genetic services utilization. System-based interventions that reduce socioeconomic disparities and empower YBCS with genetic knowledge, as well as physician referrals, can increase access to genetic services.
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http://dx.doi.org/10.1038/s41436-018-0349-1DOI Listing
June 2019

Predictors and interdependence of family support in a random sample of long-term young breast cancer survivors and their biological relatives.

Cancer Med 2018 10 5;7(10):4980-4992. Epub 2018 Sep 5.

School of Nursing, University of Michigan, Ann Arbor, Michigan.

Objective: Women diagnosed with breast cancer younger than 45 years (young breast cancer survivors-YBCS) and their biological relatives face significant stressors. Although family support is an important coping resource, little is known about YBCS' and relatives' support and whether it is interdependent. The study described family support in YBCS and their biological relatives; identified demographic, clinical, and psychosocial predictors of support; and determined the interdependence of support in YBCS-relatives family units.

Methods: Data were collected from a random sample of YBCS and their first- or second-degree female relatives. Actor-partner interdependence models (APIM) explored predictors and interdependence of YBCS' and relatives' family support in dyads (YBCS and relative) and triads (YBCS and two relatives).

Results: Among n = 310 YBCS and n = 431 first- or second-degree relatives, family support was higher in triads compared to dyads. APIMs identified actor effects in dyads, and actor and partner effects in triads. Across all family units, YBCS' higher self-efficacy was associated with higher YBCS support (actor effect) and relative support (partner effect); YBCS' prior diagnosis of depression was associated with lower YBCS and relative support (actor and partner effect); cost-related lack of access to care was associated with lower support among YBCS (actor effect) and relatives (actor and partner effect).

Conclusions: Family support was interdependent and was affected by self-efficacy, depression, and access to care. Interventions should include YBCS and relatives, enhance self-efficacy and access to care.
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http://dx.doi.org/10.1002/cam4.1766DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6198202PMC
October 2018

Construct Validity of the Multi-Source Interference Task to Examine Attention in Heart Failure.

Nurs Res 2018 Nov/Dec;67(6):465-472

Miyeon Jung, PhD, RN, is Assistant Professor, Indiana University School of Nursing, Indianapolis. John Jonides, PhD, is Professor, Department of Psychology, University of Michigan, Ann Arbor. Marc G. Berman, PhD, is Assistant Professor, Department of Psychology, University of Chicago, Illinois. Laurel Northouse, PhD, RN, FAAN, is Professor Emerita, University of Michigan School of Nursing, Ann Arbor. Todd M. Koelling, MD, is Professor, School of Medicine, University of Michigan, Ann Arbor. Susan J. Pressler, PhD, RN, FAAN, FAHA, is Professor, Indiana University School of Nursing, Indianapolis.

Background: Patients with heart failure (HF) are at risk of cognitive dysfunction, including decreased directed attention. Directed attention is critical for performing daily activities including HF self-care by facilitating one to follow instructions or train-of-thought when there are interferences in which presented stimuli are in conflict with one another. The Multi-Source Interference Task (MSIT) is a computerized neuropsychological test that examines the function of the dorsal anterior cingulate cortex, the neurological substrate for directed attention. However, the MSIT has not been used in past HF studies.

Objective: The purpose of the study was to examine construct validity of the MSIT in HF.

Methods: Baseline data were obtained from a cognitive intervention study among patients with HF (n = 22) and age- and education-matched healthy adults (n = 20). Construct validity was evaluated using t tests to examine differences between patients with HF and healthy adults and congruent and incongruent MSIT trials. Pearson's correlations were computed to examine relationships between the MSIT and Trail-Making Test, Stroop Test, and Attentional Function Index.

Results: Compared with healthy adults, patients with HF demonstrated worse performance (i.e., slower response times and higher error rates) on MSIT. Patients with HF had worse performance on MSIT incongruent trials than congruent trials. Interference z scores of MSIT did not correlate with Trail-Making Tests A and B and Stroop Test interference z scores, but the MSIT interference z scores correlated with perceived attention function measured by Attentional Function Index.

Discussion: Construct validity of the MSIT was supported, in part, among patients with HF. The MSIT is a sensitive measure of detecting worse directed attention among patients with HF compared with healthy adults. The preliminary findings support the use of the MSIT as a measure of directed attention in HF. Confirmation is warranted for current findings in larger samples.
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http://dx.doi.org/10.1097/NNR.0000000000000314DOI Listing
February 2019

Predictors of quality of life and depression among Korean-American cancer patients and their family caregivers.

Psychooncology 2018 12 13;27(12):2717-2724. Epub 2018 Sep 13.

School of Nursing, University of Michigan, Ann Arbor, MI, USA.

Objective: This study examined social, cultural, and appraisal factors associated with Korean-American cancer patients' and their family caregivers' quality of life (QOL) and depression.

Methods: Data were from Korean-American cancer patients and their family caregivers (N = 60 dyads) living in the United States. Study aims were examined using descriptive statistics and multiple regression.

Results: For patients, higher social support and lower negative appraisal of illness predicted higher patient QOL; negative appraisal of illness also predicted higher patient depression. For caregivers, older age, having fewer traditional Korean values, and more modern (individualistic) values predicted higher caregiver QOL. Caregivers who held more modern values also had less depression.

Conclusions: Higher support and less negative appraisal predicted better QOL in patients. For caregivers however, the type of cultural values they held (tradition or modern) was a key factor that predicted level of QOL and depression. Assessment of support and appraisal as well as attention to cultural values may enhance their QOL and reduce depression.
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http://dx.doi.org/10.1002/pon.4864DOI Listing
December 2018

Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study.

JMIR Cancer 2018 Apr 13;4(1):e7. Epub 2018 Apr 13.

School of Nursing, University of Michigan, Ann Arbor, MI, United States.

Background: Carriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer.

Objective: The aim of this paper was to describe the development of the Family Gene Toolkit, a Web-based intervention targeting BRCA carriers and untested blood relatives, designed to enhance coping, family communication, and decision making.

Methods: We present findings from focus groups regarding intervention acceptability and participant satisfaction and from a pre-post pilot study with random allocation to a wait-listed control group regarding intervention feasibility and usability.

Results: The Family Gene Toolkit was developed by a multidisciplinary team as a psycho-educational and skills-building intervention. It includes two live webinar sessions and a follow-up phone call guided by a certified genetic counselor and a master's prepared oncology nurse. Each live webinar includes two modules (total four modules) presenting information about BRCA mutations, a decision aid for genetic testing, and two skill-building modules for effective coping and family communication. Participants in focus groups (n=11) were highly satisfied with the intervention, reporting it to be useful and describing clearly the important issues. From the 12 dyads recruited in the pre-post pilot study (response rate 12/52, 23%), completion rate was 71% (10/14) for intervention and 40% (4/10) for wait-listed control groups.

Conclusions: Acceptability and satisfaction with the Family Gene Toolkit is high. On the basis of the findings from usability and feasibility testing, modifications on timing, delivery mode, and recruitment methods have been implemented.

Trial Registration: ClinicalTrials.gov NCT02154633; https://clinicaltrials.gov/ct2/show/NCT02154633 (Archived by WebCite at http://www.webcitation.org/6yYNvLPjv).
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http://dx.doi.org/10.2196/cancer.9210DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5924376PMC
April 2018

Evaluating a psychosocial intervention for men with prostate cancer and their partners: Outcomes and lessons learned from a randomized controlled trial.

Appl Nurs Res 2018 04 31;40:143-151. Epub 2018 Jan 31.

Institute of Nursing and Health Research, University of Ulster, Newtownabbey, UK. Electronic address:

Aim: This study evaluated the process and outcome of a psychosocial intervention for men with prostate cancer and their partners. As more men survive prostate cancer, they and their partners need help and support to help them cope with the physical and psychosocial effects of the disease and treatment. There is a lack of psychosocial interventions for men with prostate cancer and their partners.

Methods: A randomized controlled trial was conducted with 34 participants to measure the effects of the intervention on selected psychosocial outcomes, post-intervention and at one month' follow-up. The nine-week program (CONNECT) consisted of three group and two telephone sessions. It focused on symptom management, sexual dysfunction, uncertainty management, positive thinking and couple communication. The outcomes, measured by validated tools were: self-efficacy, quality of life, symptom distress, communication, uncertainty and illness benefits.

Results: The men in the intervention group did better on two outcomes (communication and support) than controls. Partners in the intervention group did better than controls on most outcomes. Less participants than expected participated in the trial. The reasons for non-participation included partners not wishing to participate, men not interested in group work, and not understanding the core purpose of the intervention. The cost of training facilitators and for delivering the intervention appeared to be low.

Conclusion: The knowledge generated from this study will be beneficial for all those grappling with the challenges of developing, implementing and evaluating complex psychosocial interventions. This study has also highlighted the difficulties in recruiting men and their partners in clinical trials.
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http://dx.doi.org/10.1016/j.apnr.2018.01.008DOI Listing
April 2018

Enhancing Survivorship Care Planning for Patients With Localized Prostate Cancer Using a Couple-Focused mHealth Symptom Self-Management Program: Protocol for a Feasibility Study.

JMIR Res Protoc 2018 Feb 26;7(2):e51. Epub 2018 Feb 26.

School of Nursing, University of North Carolina, Chapel Hill, NC, United States.

Background: This project explores a new model of care that enhances survivorship care planning and promotes health for men with localized prostate cancer transitioning to posttreatment self-management. Survivorship care planning is important for patients with prostate cancer because of its high incidence rate in the United States, the frequent occurrence of treatment-related side effects, and reduced quality of life (QOL) for both men and their partners. A key component of comprehensive survivorship care planning is survivorship care plans (SCPs), documents that summarize cancer diagnosis, treatment, and plans for follow-up care. However, research concerning the effectiveness of SCPs on patient outcomes or health service use has thus far been inconclusive. SCPs that are tailored to individual patients' needs for information and care may improve effectiveness.

Objective: This study aims to examine the feasibility of an enhanced survivorship care plan (ESCP) that integrates a symptom self-management mHealth program called Prostate Cancer Education and Resources for Couples (PERC) into the existing standardized SCP. The specific aims are to (1) examine the feasibility of delivering ESCPs and (2) to estimate the magnitude of benefit of ESCPs.

Methods: We will use a two-group randomized controlled pretest-posttest design and collect data at baseline (T1) and 4 months later (T2) among 50 patients completing initial treatment for localized prostate cancer and their partners. First, we will assess the feasibility of ESCP by recruitment, enrollment, and retention rates; program satisfaction with the ESCP; and perceived ease of use of the ESCP. To achieve the secondary aim, we will compare the ESCP users with the standardized SCP users and assess their primary outcomes of QOL (overall, physical, emotional, and social QOL); secondary outcomes (reduction in negative appraisals and improvement in self-efficacy, social support, and health behaviors to manage symptoms); and number of visits to posttreatment care services between T1 and T2. We will assess the primary and secondary outcomes using measurements with sound psychometrical properties. We will use a qualitative and quantitative mixed methods approach to achieve the research aims.

Results: This project is ongoing and will be completed by the end of 2018.

Conclusions: The results from this study will help design a definitive randomized trial to test the efficacy of the ESCPs, a potentially scalable program, to enhance supportive care for prostate cancer patients and their families.
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http://dx.doi.org/10.2196/resprot.9118DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5847815PMC
February 2018

Oncology Nurses' Knowledge, Confidence, and Practice in Addressing Caregiver Strain and Burden

Oncol Nurs Forum 2018 03;45(2):187-196

Dana-Farber Cancer Institute.

Objectives: To describe nurses' practices, confidence, and knowledge of evidence-based interventions for cancer caregiver strain and burden and to identify factors that contribute to these aspects. 
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Sample & Setting: 2,055 Oncology Nursing Society members completed an emailed survey.
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Methods & Variables: Pooled analysis of survey results. Variables included the baseline nursing assessment, intervention, confidence, knowledge, strategies used, and barriers encountered. 
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Results: Nurses tend to overestimate the strength of evidence for interventions not shown to be effective and have moderate confidence in assessing and intervening with caregivers. Having been an informal caregiver and having received care from an informal caregiver were associated with higher reported practice and confidence. Major strategies used were referral to social workers and others. Barriers reported were financial, caregiver emotional responses, and distance. 
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Implications For Nursing: An opportunity exists to increase nurses' knowledge and confidence in assessment and intervention with caregivers. Greater use of technology may help nurses overcome some barriers to working with caregivers. Findings can be used to plan continuing education, develop clinical processes, and identify resources nurses need to address strain and burden among informal caregivers.
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http://dx.doi.org/10.1188/18.ONF.187-196DOI Listing
March 2018

Reducing informal caregiver burden in cancer: evidence-based programs in practice.

Transl Behav Med 2018 03;8(2):145-155

School of Nursing, University of Michigan, Ann Arbor, MI, USA.

Caring for people with cancer can be a burdensome and emotionally straining experience. Without adequate psychosocial support, distressed caregivers are at risk for psychiatric and medical morbidity, which can adversely affect patient outcomes. Although there is a tremendous need to provide effective and timely supportive care services for cancer caregivers, few community or clinically based services exist and the needs of these essential caregivers are profoundly underserved. This article describes three existing evidence-based programs and tools that address the needs of family caregivers of cancer patients: (a) the FOCUS Program, tested for efficacy in prior randomized clinical trials and implemented in community settings by agency staff; (b) the Program for the Study of Cancer Caregivers at Memorial Sloan Kettering Cancer Center (MSKCC), which addresses the needs of caregivers in a large health care system; and (c) CancerSupportSource®-Caregiver, an online platform for distress screening and referral developed by the Cancer Support Community to assess and address caregivers' needs. We also describe next steps related to broader dissemination for practitioners considering how best to support cancer caregivers now and in the future. Although each evidence-based program or tool represents a unique approach to supporting caregivers, together these approaches allow for a greater likelihood of meeting caregiver needs across a variety of contexts. Collaboration within and across organizations allowed for the development and effective implementation of each of the described initiatives.
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http://dx.doi.org/10.1093/tbm/ibx028DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6257028PMC
March 2018

Surveillance for cancer recurrence in long-term young breast cancer survivors randomly selected from a statewide cancer registry.

Breast Cancer Res Treat 2018 May 20;169(1):141-152. Epub 2018 Jan 20.

Nursing Science, Faculty of Medicine, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.

Purpose: This study examined clinical breast exam (CBE) and mammography surveillance in long-term young breast cancer survivors (YBCS) and identified barriers and facilitators to cancer surveillance practices.

Methods: Data collected with a self-administered survey from a statewide, randomly selected sample of YBCS diagnosed with invasive breast cancer or ductal carcinoma in situ younger than 45 years old, stratified by race (Black vs. White/Other). Multivariate logistic regression models identified predictors of annual CBEs and mammograms.

Results: Among 859 YBCS (n = 340 Black; n = 519 White/Other; mean age = 51.0 ± 5.9; diagnosed 11.0 ± 4.0 years ago), the majority (> 85%) reported an annual CBE and a mammogram. Black YBCS in the study were more likely to report lower rates of annual mammography and more barriers accessing care compared to White/Other YBCS. Having a routine source of care, confidence to use healthcare services, perceived expectations from family members and healthcare providers to engage in cancer surveillance, and motivation to comply with these expectations were significant predictors of having annual CBEs and annual mammograms. Cost-related lack of access to care was a significant barrier to annual mammograms.

Conclusions: Routine source of post-treatment care facilitated breast cancer surveillance above national average rates. Persistent disparities regarding access to mammography surveillance were identified for Black YBCS, primarily due to lack of access to routine source of care and high out-of-pocket costs.

Implications: Public health action targeting cancer surveillance in YBCS should ensure routine source of post-treatment care and address cost-related barriers. Clinical Trials Registration Number: NCT01612338.
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http://dx.doi.org/10.1007/s10549-018-4674-5DOI Listing
May 2018

Multilingual Self-Management Resources for Prostate Cancer Survivors and Their Partners: Results of a Long-Term Academic-State Health Department Partnership to Promote Survivorship Care.

Urology 2017 Dec 23;110:92-97. Epub 2017 Jun 23.

School of Nursing, University of Michigan, Ann Arbor, MI.

Objective: To provide innovative, evidence-based self management information and supportive care for prostate cancer survivors and their partners. We describe how an academic-public partnership facilitated the broad dissemination of evidence-based, multilingual survivorship educational materials via a state-managed prostate cancer website.

Methods: We outline the steps of an academic-public partnership leading to dissemination of online, survivorship materials as a resource for prostate cancer survivors and their partners. We examined the 5-year utilization of the materials from January 2011 to December 2015 according to 14 content areas (e.g., urinary, bowel, and sexual problems, fatigue, communication, cancer stress) and across 3 languages (English, Spanish, Arabic).

Results: The total number of prostate cancer survivorship materials downloaded from January 2011 to December 2015 was 89,348. The number of downloaded materials increased over time from 6,421 in 2011 to 17,496 in 2015. The most commonly downloaded content area was urine problems (27.5%), followed by bowel problems (23.4%) and sexual side effects (16.2%). The majority of downloaded materials was in English (86.3%), followed by Spanish (9.8%) and Arabic (3.9%).

Conclusion: The academic-public partnership facilitated broad dissemination of evidence-based informational materials for prostate cancer survivors and their partners through a state-managed website from 2011 to 2015. Given the increasing role of academic-public partnerships in funding and development of robust, sustainable prostate cancer survivorship resources, this work serves as an introduction to these evidence-based materials and highlights a successful model of engagement between practitioners, research scientists, and public health administration.
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http://dx.doi.org/10.1016/j.urology.2017.06.017DOI Listing
December 2017

Optimism, Symptom Distress, Illness Appraisal, and Coping in Patients With Advanced-Stage Cancer Diagnoses Undergoing Chemotherapy Treatment.

Oncol Nurs Forum 2017 05;44(3):384-392

University of Michigan, Ann Arbor.

Purpose/objectives: To explore the relationships between optimism, self-efficacy, symptom distress, treatment complexity, illness appraisal, coping, and mood disturbance in patients with advanced-stage cancer.
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Design: Cross-sectional study.
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Setting: Smilow Cancer Hospital at Yale New Haven in Connecticut, an outpatient comprehensive cancer center.
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Sample: A convenience sample of 121 adult patients with stages III-IV cancer undergoing active chemotherapy.
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Methods: Participants completed common self-report questionnaires to measure variables. Treatment hours and visits were calculated from data retrieved from medical record review. Mediation and path analysis were conducted to identify direct and indirect pathways from the significant antecedent variables to mood disturbance.
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Main Research Variables: Dispositional optimism, self-efficacy, social support, treatment complexity, symptom distress, illness appraisal, coping, and mood disturbance.
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Findings: Greater optimism and self-efficacy were associated with less negative illness appraisal, less avoidant coping, and decreased mood disturbance. Conversely, greater symptom distress was associated with greater negative illness appraisal, greater avoidant coping, and greater mood disturbance. In the final model, optimism and symptom distress had direct and indirect effects on mood disturbance. Indirect effects were partially mediated by illness appraisal.
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Conclusions: Mood disturbance resulted from an interaction of disease stressors, personal resources, and cognitive appraisal of illness. Avoidant coping was associated with greater disturbed mood, but neither avoidant nor active coping had a significant effect on mood in the multivariate model. 
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Implications For Nursing: Illness appraisal, coping style, and symptom distress are important targets for intervention. Optimism is a beneficial trait and should be included, along with coping style, in comprehensive nursing assessments of patients with cancer.
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http://dx.doi.org/10.1188/17.ONF.384-392DOI Listing
May 2017

Effectiveness of implementing a dyadic psychoeducational intervention for cancer patients and family caregivers.

Support Care Cancer 2017 11 13;25(11):3395-3406. Epub 2017 Jun 13.

University of Michigan School of Nursing, 400 North Ingalls Street, Room 2160, Ann Arbor, MI, 48109-5482, USA.

Purpose: This study examined the effectiveness, feasibility, and satisfaction with implementation of the FOCUS program in two US Cancer Support Community affiliates in Ohio and California as well as the cost to deliver the program. FOCUS is an evidence-based psychoeducational intervention for dyads (cancer patients and caregivers).

Methods: A pre-post-intervention design was employed. Eleven, five-session Focus programs were delivered by licensed professionals in a small group format (three-four dyads/group) to 36 patient-caregiver dyads. An Implementation Training Manual, a FOCUS Intervention Protocol Manual, and weekly conference calls were used to foster implementation. Participants completed questionnaires prior to and following completion of each five-session FOCUS program to measure primary (emotional distress, quality of life) and secondary outcomes (benefits of illness, self-efficacy, and dyadic communication). Enrollment and retention rates and fidelity to FOCUS were used to measure feasibility. Cost estimates were based on time and median hourly wages. Repeated analysis of variance was used to analyze the effect of FOCUS on outcomes for dyads. Descriptive statistics were used to examine feasibility, satisfaction, and cost estimates.

Results: FOCUS had positive effects on QOL (p = .014), emotional (p = .012), and functional (p = .049) well-being, emotional distress (p = .002), benefits of illness (p = .013), and self-efficacy (p = .001). Intervention fidelity was 85% with enrollment and retention rates of 71.4 and 90%, respectively. Participants were highly satisfied. Cost for oversight and delivery of the five-session FOCUS program was $168.00 per dyad.

Conclusions: FOCUS is an economic and effective intervention to decrease distress and improve the quality of life for dyads.
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http://dx.doi.org/10.1007/s00520-017-3758-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610667PMC
November 2017

Online support groups for women with breast cancer.

Cochrane Database Syst Rev 2017 Mar 10;3:CD011652. Epub 2017 Mar 10.

Frontier Science Scotland, Kincraig, Scotland, UK.

Background: Survival rates for women with a diagnosis of breast cancer continue to improve. However, some women may experience physical, psychological and emotional effects post diagnosis, throughout treatment and beyond. Support groups can provide opportunities for people to share their experiences and learn from others. As the number of online support groups increases, more and more women with breast cancer will likely access them.

Objectives: To assess effects of online support groups on the emotional distress, uncertainty, anxiety, depression and quality of life (QoL) of women with breast cancer.

Search Methods: We searched for trials in the Cochrane Breast Cancer Specialised Register, the Cochrane Central Register of Controlled Trials (CENTRAL; 2016, Issue 4), MEDLINE, Embase and PsycINFO on 2 May 2016, and we handsearched journals and reference lists. We also searched the World Health Organization's International Clinical Trials Registry Platform (WHO ICTRP) search portal and clinicaltrials.gov on 2 May 2016.

Selection Criteria: We included randomised controlled trials (RCTs) assessing effects of online support groups on women with a diagnosis of breast cancer and women who have completed breast cancer treatment. We included studies comparing online support groups with a usual care group, and studies comparing two or more types of online support groups (without a usual care group).

Data Collection And Analysis: Two review authors independently extracted data and assessed risk of bias. We presented outcome data using mean differences (MDs) and standardised mean differences (SMDs) along with 95% confidence intervals (CIs), and we used the fixed-effect model when appropriate. We assessed the quality of the body of evidence using the GRADE approach.

Main Results: We included six studies (492 women) that assessed online support groups for women with breast cancer. Online support groups in these six trials lasted from six to 30 weeks. Women participated in these groups between 1.5 and 2.5 hours per week, and investigators conducted all studies in the USA. Participants were predominantly white and well educated and were moderate to high earners. Four studies compared an online support group versus a control group, and the other two compared a 'moderated' versus a 'peer-led' online support group, and a 'standard' versus an 'enhanced' online support group, respectively.None of the included studies measured 'emotional distress' or uncertainty. One study (78 women) for which data for analysis were missing reported no positive effects of online support on 'distress' and 'cancer-specific distress' versus support provided by a control group. Two studies measured anxiety: One study (72 women) found no difference in anxiety at the end of the intervention between the online support group and the control group (MD -0.40, 95% CI -6.42 to 5.62; low-quality evidence), and the second study (184 women) reported a reduction in anxiety levels at the end of the intervention when comparing the 'standard' support group (run by participants without prompting from health professionals) versus an 'enhanced' online support group (in which participants were specifically asked by the researcher to respond to one another's need for support).Five studies (414 women) measured depression. Three studies compared depression in the online support group with depression in the control group. Pooled data from two studies (120 women) showed a small to moderate reduction in depression in the online support group compared with control groups at the end of the intervention (SMD -0.37, 95% CI -0.75 to 0.00; very low-quality evidence). The third study, a pilot study (30 women), provided no data for analysis but reported no difference in depression between participants in support and control groups at the end of the intervention. Of the remaining two studies that measured depression, one study (60 women) provided no extractable data for comparison but reported no difference in depressive symptoms between a 'moderated' and a 'peer-led' support group; the other study (184 women) reported greater reduction in depression in the 'standard' support group than in the 'enhanced' online support group.Three studies measured quality of life. One pilot study (30 women) provided limited data for analysis but reported no change in quality of life at the end of the intervention. Only two studies (140 women) provided data for pooling and showed no positive effects on quality of life at four months post intervention compared with controls (SMD -0.11, 95% CI -0.47 to 0.24; very low-quality evidence). At 12 months post intervention, one study (78 women) reported that the intervention group did not attain better quality of life scores than the control group (MD -10.89, 95% CI -20.41 to -1.37; low-quality evidence).We found no data for subgroup analyses on stage of disease, treatment modality and types and doses of interventions. No studies measured adverse effects.

Authors' Conclusions: This review did not find the evidence required to show whether participation in online support groups was beneficial for women with breast cancer, because identified trials were small and of low or very low quality. Large, rigorous trials with ethnically and economically diverse participants are needed to provide robust evidence regarding the psychosocial outcomes selected for this review.
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http://dx.doi.org/10.1002/14651858.CD011652.pub2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6464660PMC
March 2017

Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry: a methodological study.

Cancer Causes Control 2017 03 14;28(3):191-201. Epub 2017 Feb 14.

University of Michigan, School of Public Health, 1415 Washington Heights, Ann Arbor, MI, 48109, USA.

Purpose: Cancer genetic services (counseling/testing) are recommended for women diagnosed with breast cancer younger than 45 years old (young breast cancer survivors-YBCS) and at-risk relatives. We present recruitment of YBCS, identification and recruitment of at-risk relatives, and YBCS willingness to contact their cancer-free, female relatives.

Methods: A random sample of 3,000 YBCS, stratified by race (Black vs. White/Other), was identified through a population-based cancer registry and recruited in a randomized trial designed to increase use of cancer genetic services. Baseline demographic, clinical, and family characteristics, and variables associated with the Theory of Planned Behavior (TPB) were assessed as predictors of YBCS' willingness to contact at-risk relatives.

Results: The 883 YBCS (33.2% response rate; 40% Black) who returned a survey had 1,875 at-risk relatives and were willing to contact 1,360 (72.5%). From 853 invited at-risk relatives (up to two relatives per YBCS), 442 responded (51.6% response rate). YBCS with larger families, with a previous diagnosis of depression, and motivated to comply with recommendations from family members were likely to contact a greater number of relatives. Black YBCS were more likely to contact younger relatives and those living further than 50 miles compared to White/Other YBCS.

Conclusion: It is feasible to recruit diverse families at risk for hereditary cancer from a population-based cancer registry. This recruitment approach can be used as a paradigm for harmonizing processes and increasing internal and external validity of large-scale public health genomic initiatives in the era of precision medicine.
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http://dx.doi.org/10.1007/s10552-017-0858-2DOI Listing
March 2017

Engagement in health-promoting behaviors and patient-caregiver interdependence in dyads facing advanced cancer: an exploratory study.

J Behav Med 2017 Jun 11;40(3):506-519. Epub 2017 Jan 11.

School of Nursing, University of Michigan, Ann Arbor, MI, USA.

Diet and exercise are important for the wellbeing of people with cancer and their family caregivers. Unfortunately, little is known about their behaviors over time or factors that may influence their engagement in these behaviors. This exploratory study examined the influence of chronic conditions, symptom distress, and perceived social support on exercise and diet behaviors of patients with advanced cancer and their caregivers using the actor-partner interdependence mediation model (APIMeM) and interdependence theory as guiding frameworks. This secondary analysis uses self-report data from a large RCT (N = 484 patient-caregiver dyads) at three time points: baseline data was collected within three months of the diagnosis, at 3 months post-baseline, and 6 months post-baseline. A number of actor effects were observed: patient and caregiver prior exercise and diet were significant predictors of their own future exercise and diet behaviors; more patient-reported social support was associated with less patient exercise; more patient symptom distress was associated with poorer patient diet; and, more caregiver-reported social support was associated with more caregiver exercise and better caregiver diet. Partner effects were also observed: more patient exercise was positively associated with more caregiver exercise; more patient comorbidities were associated with better caregiver diet; more caregiver-reported social support was associated with better patient diet; and, more patient-reported social support was associated with better caregiver diet. Despite the challenges of advanced cancer and caregiving, past exercise and diet behavior remained a significant predictor of future behavior. Other health problems and perceptions of social support within the dyad may exert a positive or negative influence on patient/caregiver diet and exercise.
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http://dx.doi.org/10.1007/s10865-016-9819-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7286313PMC
June 2017

Randomized Crossover Study of the Natural Restorative Environment Intervention to Improve Attention and Mood in Heart Failure.

J Cardiovasc Nurs 2017 Sep/Oct;32(5):464-479

Miyeon Jung, PhD, RN Postdoctoral Fellow, Center for Enhancing Quality of Life in Chronic Illness, School of Nursing, Indiana University, Indianapolis. John Jonides, PhD Professor, Department of Psychology, University of Michigan, Ann Arbor. Laurel Northouse, PhD, RN Professor Emerita, School of Nursing, University of Michigan, Ann Arbor. Marc G. Berman, PhD Assistant Professor, Department of Psychology, University of Chicago, Illinois. Todd M. Koelling, MD Professor, School of Medicine, Division of Internal Medicine, Cardiology, University of Michigan, Ann Arbor. Susan J. Pressler, PhD, RN Professor, School of Nursing, Indiana University, Indianapolis.

Background: In heart failure (HF), attention may be decreased because of lowered cerebral blood flow and increased attentional demands needed for self-care.

Objective: Guided by the Attention Restoration Theory, the objective was to test the efficacy of the natural restorative environment (NRE) intervention on improving attention and mood among HF patients and healthy adults.

Methods: A randomized crossover pilot study was conducted among 20 HF patients and an age- and education-matched comparison group of 20 healthy adults to test the efficacy of the NRE intervention compared with an active control intervention. Neuropsychological tests were administered to examine attention, particularly attention span, sustained attention, directed attention, and attention switching, at before and after the intervention. Mood was measured with the Positive and Negative Affect Schedule.

Results: No significant differences were found in attention and mood after the NRE intervention compared with the control intervention among the HF patients and the healthy adults. In analyses with HF patients and healthy adults combined (n = 40), significant differences were found. Compared with the control intervention, sustained attention improved after the NRE intervention (P = .001) regardless of the presence of HF. Compared with the healthy adults, HF patients performed significantly worse on attention switching after the control intervention (P = .045).

Conclusions: The NRE intervention may be efficacious in improving sustained attention in HF patients. Future studies are needed to enhance the NRE intervention to be more efficacious and tailored for HF patients and test the efficacy in a larger sample of HF patients.
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http://dx.doi.org/10.1097/JCN.0000000000000368DOI Listing
June 2018

The influence of dyadic symptom distress on threat appraisals and self-efficacy in advanced cancer and caregiving.

Support Care Cancer 2017 01 8;25(1):185-194. Epub 2016 Sep 8.

School of Nursing, University of Michigan, Ann Arbor, MI, USA.

Purpose: Physical and psychological symptoms experienced by patients with advanced cancer influence their well-being; how patient and family caregiver symptom distress influence each other's well-being is less understood. This study examined the influence of patient and caregiver symptom distress on their threat appraisals and self-efficacy to cope with cancer.

Methods: We conducted a secondary analysis of baseline data from an RCT that enrolled patients with advanced cancer and their family caregivers (N = 484 dyads). Structural equation modeling and the actor-partner interdependence mediation model (APIMeM) were used to examine two models: threat appraisals as a mediator of the relationship between symptom distress and individual and family-related self-efficacy; and, self-efficacy (individual and family dimensions) as mediators of the relationship between symptom distress and threat appraisals.

Results: Data suggest the self-efficacy mediation model was the preferred model. More patient and caregiver symptom distress was directly associated with their own lower self-efficacy and more threatening appraisals. Patient and caregiver individual self-efficacy also mediated the relationship between their own symptom distress and threat appraisals. There were also significant interdependent effects. More patient symptom distress was associated with less caregiver family-related self-efficacy, and more caregiver symptom distress was directly associated with more threatening patient appraisals.

Conclusions: Patient and caregiver symptom distress influenced their own and in some cases each other's cognitive appraisals. Limitations of this study include the use of cross-sectional data and assessments of individually-focused (vs. family-focused) threat appraisals. These findings highlight the need to consider the management of patient and caregiver symptoms during advanced cancer.
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http://dx.doi.org/10.1007/s00520-016-3385-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5130593PMC
January 2017

Qualitative Analysis of the Experience of Mental Fatigue of Family Caregivers of Patients With Cancer in Phase I Trials.

Oncol Nurs Forum 2016 07;43(4):E153-60

Yale Cancer Center.

Purpose/objectives: To examine family caregivers' experience of mental fatigue, identify strategies they use to manage it, and ascertain the kind of help they would like from healthcare professionals.
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Research Approach: Descriptive, qualitative study that was part of a larger mixed-methods study.
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Setting: Metropolitan comprehensive cancer center in the midwestern United States.
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Participants: 79 family caregivers of patients with advanced cancer who were participating in phase I clinical trials.
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Methodologic Approach: Caregivers completed a semistructured, open-ended questionnaire and demographic and health history forms.
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Findings: Caregivers were able to define mental fatigue and give many examples of it. They reported that mental fatigue did not interfere with patient care, but that it did have a negative effect on their own self-care. They identified strategies to manage mental fatigue. They wanted more information and support from professionals.
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Conclusions: The majority of caregivers experienced mental fatigue, which manifested as trouble concentrating, difficulty remembering things, and irritability. The majority worked outside of the home and had health problems of their own.
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Interpretation: Healthcare professionals need to assess caregivers for mental fatigue and find ways to help them reduce mental fatigue and restore their attention. Nurses are in a prime position to mobilize resources for caregivers to effectively manage burden and reduce mental fatigue.
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http://dx.doi.org/10.1188/16.ONF.E153-E160DOI Listing
July 2016

Meaning-based coping, chronic conditions and quality of life in advanced cancer & caregiving.

Psychooncology 2017 09 5;26(9):1316-1323. Epub 2016 May 5.

School of Nursing, University of Michigan, Ann Arbor, MI, USA.

Objective: This study examined the relationship between the number of co-existing health problems (patient comorbidities and caregiver chronic conditions) and quality of life (QOL) among patients with advanced cancer and their caregivers and assessed the mediating and moderating role of meaning-based coping on that relationship.

Methods: Data came from patients with advanced cancers (breast, colorectal, lung, and prostate) and their family caregivers (N = 484 dyads). Study hypotheses were examined with structural equation modeling using the actor-partner interdependence mediation model. Bootstrapping and model constraints were used to test indirect effects suggested by the mediation models. An interaction term was added to the standard actor-partner interdependence model to test for moderation effects.

Results: More patient comorbidities were associated with lower patient QOL. More caregiver chronic conditions were associated with lower patient and caregiver QOL. Patient comorbidities and caregiver chronic conditions had a negative influence on caregiver meaning-based coping but no significant influence on patient meaning based coping. Caregiver meaning-based coping mediated relationships between patient comorbidities and caregiver health conditions and patient and caregiver QOL. No significant moderating effects were observed.

Conclusions: Despite the severity of advanced cancer for patients and caregivers, the co-existing health problems of one member of the dyad have the potential to directly or indirectly affect the wellbeing of the other. Future research should consider how the number of patient comorbidities and caregiver chronic conditions, as well as the ability of patients and caregivers to manage those conditions, influences their meaning-based coping and wellbeing. Copyright © 2016 John Wiley & Sons, Ltd.
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http://dx.doi.org/10.1002/pon.4146DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5097695PMC
September 2017

The relationship between illness representations, risk perception and fear of cancer recurrence in breast cancer survivors.

Psychooncology 2017 09 4;26(9):1270-1277. Epub 2016 May 4.

University of Michigan School of Nursing, Ann Arbor, MI, USA.

Objective: Fear of cancer recurrence, although distinct from distress continues to be under-evaluated, captured, or treated when standard distress scales are used to assess concerns of cancer survivors. We tested a model assessing the association of demographic and clinical factors, illness representations, and perceived risk with fear of cancer recurrence in breast cancer survivors.

Methods: We recruited 117 breast cancer survivors at least one year after completing breast cancer treatment from Internet discussion boards for this cross-sectional, descriptive, correlational study. Participants completed a survey that assessed their level of fear of cancer recurrence as well as their illness representations, perceived risk of recurrence, and demographic and medical characteristics.

Results: Our model explained 62% of the variance in fear of cancer recurrence. Emotional representations (β = .46, p < .01), symptom attribution (β = .21, p < .01), timeline (β = .23, p < .01), and consequences (β = .16, p < .03) were significantly related to fear of recurrence. By contrast, the majority of clinical and demographic variables were not significant contributors to fear of recurrence.

Conclusions: Upon completion of cancer treatment, survivors with more emotional representations of the experience and those who attribute unrelated symptoms to their breast cancer have a higher level of fear of recurrence. Evaluation of these factors during treatment may help mitigate fear of recurrence in the survivorship phase of the breast cancer trajectory. Copyright © 2016 John Wiley & Sons, Ltd.
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http://dx.doi.org/10.1002/pon.4143DOI Listing
September 2017

Use of Cancer Genetics Services in African-American Young Breast Cancer Survivors.

Am J Prev Med 2016 10 23;51(4):427-36. Epub 2016 Apr 23.

University of Michigan School of Nursing, Ann Arbor, Michigan; University of Basel, Institute of Nursing Science, Basel, Switzerland. Electronic address:

Introduction: African-American women have higher rates of early-onset breast cancer compared with their Caucasian counterparts; yet, when diagnosed with breast cancer at a young age, they underuse genetic counseling and testing to manage their risk of developing future cancers.

Methods: Self-reported baseline data were collected between September 2012 and January 2013 and analyzed in 2014 from a subpopulation of 340 African-American young breast cancer survivors (YBCSs) enrolled in an RCT. YBCSs were diagnosed with invasive breast cancer or ductal carcinoma in situ between ages 20 and 45 years and were randomly selected from a statewide cancer registry. Logistic regression examined predictors of using cancer genetics services.

Results: Overall, 28% of the sample reported having genetic counseling and 21% reported having genetic testing, which were significantly lower (p≤0.005) compared with white/other YBCSs participating in the parent study. In a multivariate analysis, income was positively associated with counseling (B=0.254, p≤0.01) and testing (B=0.297, p≤0.01), whereas higher education levels (B=-0.328, p≤0.05) and lack of access to healthcare services owing to cost (B=-1.10, p≤0.03) were negatively associated with genetic counseling. Lower income and lack of care because of high out-of-pocket costs were commonly reported barriers.

Conclusions: Despite national recommendations for genetic evaluation among women with early-onset breast cancer, few African-American YBCSs reported undergoing genetic counseling and testing. Most reported that their healthcare provider did not recommend these services. Interventions addressing patient, provider, and structural healthcare system barriers to using genetic counseling and testing in this population are needed.
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http://dx.doi.org/10.1016/j.amepre.2016.03.016DOI Listing
October 2016

Factors Affecting Quality of Life for Korean American Cancer Survivors: An Integrative Review.

Oncol Nurs Forum 2016 05;43(3):E132-42

University of Michigan in Ann Arbor.

Problem Identification: Understanding of Korean American cancer survivors' quality of life (QOL) within a cultural context is limited. This article examines factors associated with the QOL of Korean American cancer survivors.
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Literature Search: A systematic literature search was conducted of PubMed, CINAHL®, Google Scholar, and EBSCO databases from January 2000 to January 2014.
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Data Evaluation: The studies were assessed for the relevance to the purpose of the review. Each study was rated on a two-point scale using an 11-item quality criteria checklist.
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Synthesis: The 13 studies that met the criteria for inclusion included 7 descriptive, 5 qualitative, and 1 mixed-method. 
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Conclusions: Social support, communication, and acculturation were key factors associated with Korean Americans' QOL. Cultural differences were evident for Korean Americans versus other Asian American ethnic groups.
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Implications For Practice: More innovative and culturally driven research is needed to understand each minority group's cultural barriers, as well as to improve cancer survivors' QOL. Improving the doctor-patient relationship is critical to promoting better cancer experiences for Korean American cancer survivors.
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http://dx.doi.org/10.1188/16.ONF.E132-E142DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4873955PMC
May 2016