Patient-targeted education (ePRO-E) to increase ePRO intent within an Alliance clinical trial (A221805-SI1).

BACKGROUND: The Patient Cloud ePRO app was adopted by the National Cancer Institute National Clinical Trials Network (NCTN) to facilitate capturing electronic patient-reported (ePRO) outcome data, but use has been low. The study objectives were to test whether a patient-targeted ePRO educational resource (ePRO-E) would increase ePRO intent (number of users) and improve data quality (high quality: ≥80% of the required surveys submitted) within an ongoing NCTN study. METHODS: The ePRO-E intervention, a patient-targeted educational resource (written material and 6-minute animated YouTube video), was designed to address ePRO barriers. ePRO intent and data quality were compared between 2 groups (N = 69): a historical control group and a prospectively recruited intervention group exposed to ePRO-E. Covariates included technology attitudes, age, sex, education, socioeconomic status, and comorbidity. RESULTS: Intervention group ePRO intent (78.8%) was statistically significantly higher than historical control group intent (47.1%) (P = .03). Patients choosing ePRO versus paper surveys had more positive and higher technology attitudes scores (P = .03). The odds of choosing ePRO were 4.7 times higher (95% Confidence Interval [CI] = 1.2 to 17.8) (P = .02) among intervention group patients and 5.2 times higher (95% CI = 1.3 to 21.6) (P = .02) among patients with high technology attitudes scores, after controlling for covariates. However, the 80% submission rate (percentage submitting ≥80% of required surveys) in the ePRO group (30.6%) was statistically significantly lower than in the paper group (57.9%) (P = .05). CONCLUSIONS: ePRO-E exposure increased ePRO intent. High technology attitudes scores were associated with ePRO selection. Since the ePRO survey submission rate was low, additional strategies are needed to promote high-quality data submission.

Impact of an automated, remote monitoring and coaching intervention in reducing hospice cancer family caregiving burden: A multisite randomized controlled trial.

BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.

What Is Most Important to Family Caregivers When Helping Patients Make Treatment-Related Decisions: Findings from a National Survey.

Prioritizing patient values-who/what matters most-is central to palliative care and critical to treatment decision making. Yet which factors are most important to family caregivers in these decisions remains understudied. Using data from a U.S. national survey of cancer caregivers (N = 1661), we examined differences in factors considered very important by caregivers when partnering with patients in cancer treatment decision making by cancer stage and caregiver sociodemographics. Fifteen factors were rated on a 4-point Likert-scale from 'very unimportant' to 'very important.' Descriptive statistics were used to characterize caregiver factors and tabulate proportions of importance for each. Generalized linear mixed effect modeling was used to examine the importance of factors by cancer stage, and chi-square analyses were performed to determine associations between caregiver sociodemographics and the five most commonly endorsed factors: quality of life (69%), physical well-being (68%), length of life (66%), emotional well-being (63%), and opinions/feelings of oncology team (59%). Significant associations (all p's < 0.05) of small magnitude were found between the most endorsed factors and caregiver age, race, gender, and ethnicity, most especially 'opinions/feelings of the oncology team'. Future work is needed to determine the best timing and approach for eliciting and effectively incorporating caregiver values and preferences into shared treatment decision making.

How Can a Trauma-Informed Care Approach Be Applied to Patients With Gynecologic Cancer?

The provision of trauma-informed care (TIC) is the clinical standard when caring for patients who have experienced sexual trauma. TIC encompasses five core principles (safety, choice, collaboration, trustworthiness, and empow.

Understanding mHealth Patient-Reported Priority Symptoms for Gynecologic Cancer During Chemotherapy: A Secondary Analysis.

OBJECTIVES: To determine the percentage of and the most prevalent moderate to severe symptoms and to analyze longitudinal patterns and co-occurrence of symptoms during the first three cycles of chemotherapy. SAMPLE & SETTING: A secondary analysis of 26 women with gynecologic cancer who reported daily symptoms. METHODS & VARIABLES: Moderate to severe symptom presence and severity levels were calculated as proportions. Symptoms for each patient were graphed during three cycles and analyzed for patterns of onset, duration, and clustering. RESULTS: Patients completed 1,562 calls to the remote symptom monitoring system. The most commonly reported moderate to severe symptoms were pain, fatigue, and trouble sleeping. Pain and fatigue co-occurred with trouble sleeping in one symptom pattern. Patterns included no moderate to severe symptoms, moderate to severe symptoms during one cycle, moderate to severe symptoms during two cycles, and moderate to severe symptoms during all cycles. IMPLICATIONS FOR NURSING: Nurses should consistently assess symptoms across cycles. To verify distinct classes of symptoms and better target interventions, further study is warranted.

The Integration of Both Practice and Research Into Gynecologic Oncology Nursing.

A striking question from a woman with ovarian cancer leads a nurse to pursue both practice and research.

The impacts of adrenoleukodystrophy newborn screening on the evaluation of adrenal dysfunction in male children: An integrative literature review.

PROBLEM: Adrenoleukodystrophy (ALD) is an x-linked genetic condition with a high risk of adrenal dysfunction recommended for newborn screening. This review aims to critically appraise and synthesize existing literature identifying the impacts of ALD newborn screening in the United States on the evaluation and treatment of adrenal dysfunction in male children. ELIGIBILITYCRITERIA: An integrative literature review was conducted using the Embase, PubMed, and CINAHL databases. English-language primary source studies published in the past decade and seminal studies were included. SAMPLE: Twenty primary sources met the inclusion criteria, including five seminal studies. RESULTS: Three major themes emerged from the review: 1) prevention of adrenal crisis, 2) unexpected outcomes, and 3) ethical impacts. CONCLUSIONS: ALD screening increases disease identification. Serial adrenal evaluation prevents adrenal crisis and death; data is needed to establish predictive outcomes in ALD prognosis. Disease incidence and prognosis will become more apparent as states increasingly add ALD screening to their newborn panel. IMPLICATIONS FOR PRACTICE: Clinicians need awareness of ALD newborn screening and state screening protocols. Families first learning of ALD through newborn screening results will require education, support, and timely referrals for appropriate care.

Technology-Assisted mHealth Caregiver Support to Manage Cancer Patient Symptoms: A Randomized Controlled Trial.

CONTEXT: Caregivers managing symptoms of family members with cancer during home hospice care, often feel ill-prepared and need patient care coaching. OBJECTIVES: This study tested the efficacy of an automated mHealth platform that included caregiver coaching on patient symptom care and nurse notifications of poorly controlled symptoms. The primary outcome was caregiver perception of patients' overall symptom severity throughout hospice care and at weeks one, two, four, and eight. Secondary outcomes compared individual symptom severity. METHODS: Caregivers (n = 298) were randomly assigned to the Symptom Care at Home (SCH) intervention (n = 144) or usual hospice care (UC) (n = 154). All caregivers placed daily calls to the automated system that assessed the presence and severity of 11 end-of-life patient physical and psychosocial symptoms. SCH caregivers received automated coaching on symptom care based on reported patient symptoms and their severity. Moderate-to-severe symptoms were also relayed to the hospice nurse. RESULTS: The SCH intervention produced a mean overall symptom reduction benefit, over UC, of 4.89 severity points (95% CI 2.86-6.92) (P < 0.001), with a moderate effect size (d = 0.55). The SCH benefit also occurred at each timepoint (P < 0.001- 0.020). There was a 38% reduction in days reporting moderate-to-severe patient symptoms compared to UC (P < 0.001) with 10/11 symptoms significantly reduced in SCH compared to UC. CONCLUSION: Automated mHealth symptom reporting by caregivers, paired with tailored caregiver coaching on symptom management and nurse notifications, reduces cancer patients' physical and psychosocial symptoms during home hospice, providing a novel and efficient approach to improving end-of-life care.

Sexual dysfunction among gynecologic cancer survivors in a population-based cohort study.

Treatment for gynecologic cancer is associated with sexual dysfunction, which may present during and/or after treatment. The aim of this study was to investigate the risk of sexual dysfunction among gynecologic cancer survivors compared to cancer-free women in a population-based cohort study. We identified a cohort of 4863 endometrial, ovarian, and cervical cancer survivors diagnosed between 1997 and 2012 in the Utah Cancer Registry. Up to five cancer-free women were matched to cancer survivors (N = 22,693). We used ICD-9 codes to identify sexual dysfunction. Cox proportional hazards models were used to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for sexual dysfunction with adjustment for potential confounders. Approximately 6.6% of gynecologic cancer survivors had sexual dysfunction diagnoses 1-5 years after cancer diagnosis. Gynecologic cancer survivors had higher risks of overall sexual dysfunction (HR: 2.51, 95% CI: 2.16, 2.93), dyspareunia (HR: 3.27, 95% CI: 2.63, 4.06), and vaginal dryness (HR: 2.63, 95% CI: 2.21, 3.12) compared to a general population of women, 1-5 years after cancer diagnosis. Sexual dysfunction was associated with advance cancer stage (HRRegional vs. Localized: 1.61, 95% CI: 1.19, 2.31), radiation therapy (HR: 1.73, 95% CI: 1.29, 2.31), and chemotherapy (HR: 1.80, 95% CI: 1.30, 2.50). This large cohort study confirms that there is an increased risk of sexual dysfunction among gynecologic cancer survivors when compared to the general population. Further investigation is needed to address the risk factors for sexual dysfunction and to improve patient-provider communication, diagnosis, documentation, and treatment of sexual dysfunction among gynecologic cancer survivors.

How technology can improve communication and health outcomes in patients with advanced cancer: an integrative review.

OBJECTIVE: Patients facing an advanced cancer diagnosis require clear communication with their clinicians. Technology has been utilized in many different capacities to navigate communication in cancer care, but few authors examine the specific areas of communication from a theoretical perspective. The purpose of this literature review was to (1) identify articles focused on technology-based communication strategies to improve health outcomes in individuals with advanced cancer, and (2) using Epstein and Street's framework, identify areas in which technology-based communication has been used to improve health outcomes, and (3) identify gaps that exist in technology-based communication care in patients with advanced cancer. METHODS: A systematic search was conducted which returned 446 articles. Using Epstein and Street's 2007 framework, the final sample was 39. RESULTS: Nine clinical trials, 29 observational studies, and 1 case study were identified. The articles were categorized into one area within Epstein and Street's areas of communication. Many of the articles examined the patient's and provider's acceptability and feasibility of technology-based methods of communication, while other articles examined their efficacy. CONCLUSIONS: While research studies were identified in each of the areas of communication, the majority of technology-based communication strategies were focused on the exchange of information between patients and their providers. Further research and the development of technology-based communication interventions assessed through clinical trials are needed in the areas of healing relationships and making decisions in cancer care. Additionally, the communication strategies found effective at improving health outcomes in advanced cancer should begin implementation into clinical practice, therefore reaching more patients.

Body Image Related to Sexual Health: Development of the Concept.

INTRODUCTION: Disturbances in body image can have an impact on sexual health and are prevalent in women of reproductive age. Although body image is important, the definition of this concept is inconsistent across the disciplines of nursing, medicine, and psychology. Use of a consistent definition in clinical practice and research could lead to a more comprehensive understanding of disturbances in body image, thereby advancing research-based knowledge and clinical practice. The purpose of this concept development was to advance the concept of body image as it relates to sexual health among women of reproductive age from the perspectives of 3 disciplines with a strong focus on body image: nursing, medicine, and psychology. METHODS: Strategies for concept development as described by Rodgers provided the basis for this work. The process includes a search, review, and synthesis of the literature surrounding the concept of interest. RESULTS: Seventy-one articles, mostly qualitative and quantitative descriptive, were included and used to develop the concept. Body image related to sexual health in women of reproductive age is a multifaceted concept that is composed of an emotional and behavioral response to one's perceived appearance, sexuality, and degree of femininity. An individual's body image is influenced by sociocultural identities, race, ethnicity, and health status. It has both physical and psychological impact on health outcomes. DISCUSSION: This interprofessional and comprehensive definition of body image should enhance understanding, assessment, and management of body image disturbances, thus bridging disciplines and enhancing interprofessional research and practice.

Body Image, Sexuality, and Sexual Functioning in Women With Gynecologic Cancer: An Integrative Review of the Literature and Implications for Research.

BACKGROUND: Cervical and uterine cancers are common in women. Diagnosis and treatment of these cancers can lead to significant issues with body image, sexuality, and sexual functioning. A comprehensive review can improve understanding of these 3 concepts, in turn enhancing identification and management. OBJECTIVES: To (1) present the qualitative, descriptive, and correlational research literature surrounding body image, sexuality, and sexual functioning in women with uterine and cervical cancer; (2) identify gaps in the literature; and (3) explore the implications of the findings for future research. METHODS: A comprehensive search of the literature was undertaken by searching PubMed, CINAHL, and PsycINFO using predetermined subject headings, keywords, and exploded topics. After a comprehensive evaluation using specific criteria, 121 articles were reviewed. RESULTS: Qualitative studies provided information about women's issues with body image, sexuality, and sexual functioning, whereas quantitative studies focused primarily on sexual functioning. The literature lacks correlational studies examining body image and sexuality. Significant issues regarding communication and quality of life were noted, and few studies were based on clear conceptual models. CONCLUSION: The state of the science gleaned from this review reveals that while much is known about sexual functioning, little is known about body image and sexuality. IMPLICATIONS FOR PRACTICE: Further work is warranted to develop conceptual models and research on body image, sexuality, and sexual functioning as a foundation for interventions to improve quality of life.

Advancing Oncology Nursing Practice Through the Adoption of Patient Monitoring Digital Tools.

OBJECTIVE: The objective of this paper is to describe the use of oncology digital symptom monitoring and patient self-management coaching tools, how nurses and nurse practitioners (NPs) can optimize their use as an adjunct in improving oncology care and discuss issues and strategies needed for adoption within a variety of clinical settings. DATA SOURCES: A review of the research literature regarding digital health in oncology symptom management in PubMed provided the foundation for this paper. CONCLUSION: Digital symptom monitoring technology provides a variety of opportunities for oncology nurses and NPs to efficiently extend and improve symptom management in multiple settings including cancer patients at home between clinic visits, at clinic visits, and during inpatient stays. Digital monitoring and patient engagement make possible frequent symptom assessments, just-in-time personalized self-management reinforcement, and judiciously alert nurses and NPs about key times for follow-up with patients supported with evidenced-based guidelines. Oncology nurses at all levels have the opportunity to be leaders in the adoption and expansion of digital tools to enhance their practice. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses and NPs can lead practice changes that improve patient outcomes through understanding and shaping the use of digital tools.