Critical Realism in Symptom Science - A Scoping Review.

There has been an increasing interest in research positioned within critical realism (CR). This analysis aimed to determine how CR has been applied in symptom science through a scoping review of the literature. Fifty-two articles were identified through searches in seven databases and search engines, and grey literature. Quantitative and qualitative analyses were performed using Excel and ATLAS.ti 8.0. Review findings indicate that CR has been used to examine two key aspects of symptoms - symptom experiences and symptom interventions. The details of how CR was operationalized are presented. This first scoping review highlights how a critical realist lens would help examine individual and contextual factors that influence symptom experiences, response to interventions, and outcomes.

Role of Pain Catastrophizing in the Effects of Cognitive Behavioral Therapy for Chronic Pain in Different Subgroups: An Exploratory Secondary Data Analysis Using Finite Mixture Models.

INTRODUCTION: Providing effective treatment for debilitating chronic pain is a challenge among many populations including military service members. Cognitive behavioral therapy for chronic pain (CBT-CP) is a leading psychological pain treatment. Pain catastrophizing is a pivotal mediator of pain-related outcomes. The purpose of this study was (1) to identify patient subgroups who differ in response to CBT-CP and (2) to explore the characteristics that define these patient subgroups. The overall goal was to obtain a better understanding of factors that may influence response to CBT-CP. MATERIALS AND METHODS: This study was a secondary analysis of data from a clinical trial of 149 U.S. active duty service members with chronic pain. Participants underwent group-based CBT-CP for 6 weeks and completed pre- and posttreatment assessments. Finite mixture models were employed to identify subgroups in treatment response, with pain impact score as the primary outcome measure. RESULTS: We identified two classes of nearly equal size with distinct pain impact responses. One class reported improved pain impact scores following CBT-CP. This improvement was significantly associated with lower (better) baseline depression scores and greater improvement in posttreatment pain catastrophizing. In contrast, the other class reported slightly worse mean pain impact scores following CBT-CP treatment; this response was not related to baseline depression or change in pain catastrophizing. CONCLUSIONS: Our findings demonstrate that a sizable proportion of individuals with chronic pain may not respond to group-based CBT-CP and may require a more individualized treatment approach.

The Gut Microbiome and Symptom Burden After Kidney Transplantation: An Overview and Research Opportunities.

Many kidney transplant recipients continue to experience high symptom burden despite restoration of kidney function. High symptom burden is a significant driver of quality of life. In the post-transplant setting, high symptom burden has been linked to negative outcomes including medication non-adherence, allograft rejection, graft loss, and even mortality. Symbiotic bacteria (microbiota) in the human gastrointestinal tract critically interact with the immune, endocrine, and neurological systems to maintain homeostasis of the host. The gut microbiome has been proposed as an underlying mechanism mediating symptoms in several chronic medical conditions including irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia, and psychoneurological disorders via the gut-brain-microbiota axis, a bidirectional signaling pathway between the enteric and central nervous system. Post-transplant exposure to antibiotics, antivirals, and immunosuppressant medications results in significant alterations in gut microbiota community composition and function, which in turn alter these commensal microorganisms' protective effects. This overview will discuss the current state of the science on the effects of the gut microbiome on symptom burden in kidney transplantation and future directions to guide this field of study.

Prevalence and Risk Factors of Fatigue in Adults with Stage 3 and 4 CKD: Findings from NHANES 2007-2012.

BACKGROUND: Fatigue is a devastating symptom experienced by adults with chronic kidney disease (CKD), but less is known about the prevalence of fatigue and factors associated with fatigue in a general population of adults with CKD. Therefore, we examined the prevalence of fatigue and identified factors associated with fatigue amongst a national cohort of US adults with CKD. METHODS: We utilized cross-sectional data from 1,079 adults from the National Health and Nutrition Examination Survey (NHANES) 2007-2012 and included participants aged 18 and over with CKD Stage 3 and 4 (eGFR between 15 and 60 ml/min/1.73m2) who had available data evaluating fatigue. Unadjusted and adjusted logistic regression models were used to evaluate the odds of having fatigue in the context of physiological, sociodemographic, psychological, and behavioral factors. RESULTS: We estimated that 48% of those with CKD had fatigue. Among the risk factors examined, the factors with the strongest evidence of association in multivariable analyses were female sex (OR 1.49, 95% CI: 1.02, 2.17), pain (OR 2.49, 95% CI: 1.57, 3.93), poor mental health (OR 1.97, 95% CI: 1.05, 3.72), anxiety (OR 1.95, 95% CI: 1.14, 3.34), and depressive symptoms (OR 2.58, 95% CI: 1.17, 5.66). CONCLUSIONS: Fatigue is a common symptom experienced by adults with CKD in the US. Physiological, sociodemographic, psychological, and behavioral factors are associated with fatigue, with psychological factors being most strongly associated. Future work is needed to identify interventions to mitigate fatigue and risk factors for fatigue in adults with CKD.

An Intervention to Reduce Sedentary Behavior in Adults with Chronic Kidney Disease: A Feasibility Study.

Adults with chronic kidney disease (CKD) tend to be extremely sedentary. We investigated the feasibility and acceptability of a sedentary-reducing intervention for adults with CKD. The intervention utilized telephone-delivered coaching and a consumer wearable device to support participants to reduce their sedentary time. The mean age of participants in the sample was 60.5 years; 72% were women, and 83% had CKD Stage 3. At baseline, participants spent 73% of their waking time sedentary. Inter vention phone call attendance was 100%, study retention was 82%, and the intervention was rated as enjoyable (9.1/10). A telephone-delivered, sedentary-reducing intervention is feasible and acceptable in adults with CKD. Future work is needed investigating the efficacy of sedentary-reducing interventions for adults with CKD.

Prevalence and clinical implications of sarcopenia in breast cancer: a systematic review and meta-analysis.

PURPOSE: The impact of sarcopenia in oncology is increasingly recognized, yet little is known about its clinical implications in breast cancer. This systematic review and meta-analysis estimates the overall prevalence of sarcopenia in breast cancer, quantifies skeletal muscle index (SMI), and comprehensively evaluates sarcopenia's impact on clinical outcomes. METHODS: We systematically searched primary original research published before June 2023 in four databases: the Cochrane Library via Wiley, CINAHL Plus with Full Text, Embase via Elsevier Excerpta Medica, and Medline via Ovid. Standardized mean SMI and 95% confidence interval (CI) were calculated by applying the random-effects model. The methodological quality of the included studies was assessed using the National Institutes of Health quality assessment checklist. RESULTS: The systematic review included 17 studies with a total of 9863 patients; the meta-analysis included 12 of these studies. The mean prevalence of sarcopenia in breast cancer (stages I-III) was 32.5%. The mean SMI assessed by CT was 43.94 cm2/m2 (95% CI 42.87, 45.01; p < .01). Overall, low muscle mass was associated with chemotherapy toxicities, dose reductions, dose delays, or treatment discontinuation. Low muscle mass was generally associated with poor survival, but in some studies, this association was not significant or reversed direction. CONCLUSION: Sarcopenia is not just a state of muscle mass loss, but an influencing factor on therapeutic effects and survival rates in oncology. It is thus necessary to recognize the risk of sarcopenia throughout the trajectory of cancer treatment, identify low muscle mass early, and manage it from a prehabilitation perspective.

Feasibility of implementing acupuncture in medically underserved breast cancer survivors (FAB): A protocol.

Nearly 94% of breast cancer survivors experience one or more symptoms or side effects during or after endocrine therapy. Joint pain, hot flashes, sleep disturbance, fatigue, depression, and anxiety are the most common concurrent symptoms, some of which can persist for 5 to 10 years. Acupuncture is a holistic modality that addresses multiple symptoms and side effects in a single therapy. Acupuncture has not yet been investigated for its effectiveness in treating the multiple symptoms experienced by breast cancer survivors receiving endocrine therapy. Medically underserved breast cancer survivors typically have limited access to acupuncture. The barriers limiting access to acupuncture need to be removed to enable equal access to breast cancer survivors for this evidence-based treatment. Thus, we developed a randomized controlled trial with a 5-week acupuncture intervention versus usual care for medically underserved breast cancer survivors. Mixed methods (semi-structured interviews, surveys, study notes) will be used to obtain in-depth understanding of barriers and facilitators for eventual implementation of the acupuncture intervention. This study will facilitate the widespread implementation, dissemination, and sustained utilization of acupuncture for symptom management among medically underserved breast cancer survivors receiving endocrine therapy.

The design and baseline characteristics for the HOPE Consortium Trial to reduce pain and opioid use in hemodialysis.

The HOPE Consortium Trial to Reduce Pain and Opioid Use in Hemodialysis (HOPE Trial) is a multicenter randomized trial addressing chronic pain among patients receiving maintenance hemodialysis for end-stage kidney disease. The trial uses a sequential, multiple assignment design with a randomized component for all participants (Phase 1) and a non-randomized component for a subset of participants (Phase 2). During Phase 1, participants are randomized to Pain Coping Skills Training (PCST), an intervention designed to increase self-efficacy for managing pain, or Usual Care. PCST consists of weekly, live, coach-led cognitive behavioral therapy sessions delivered by video- or tele-conferencing for 12 weeks followed by daily interactive voice response sessions delivered by telephone for an additional 12 weeks. At 24 weeks (Phase 2), participants in both the PCST and Usual Care groups taking prescription opioid medications at an average dose of ≥20 morphine milligram equivalents per day are offered buprenorphine, a partial opioid agonist with a more favorable safety profile than full-agonist opioids. All participants are followed for 36 weeks. The primary outcome is pain interference ascertained, for the primary analysis, at 12 weeks. Secondary outcomes include additional patient-reported measures and clinical outcomes including falls, hospitalizations, and death. Exploratory outcomes include acceptability, tolerability, and efficacy of buprenorphine. The enrollment target of 640 participants was met 27 months after trial initiation. The findings of the trial will inform the management of chronic pain, a common and challenging issue for patients treated with maintenance hemodialysis. NCT04571619.

A network analysis of pain intensity and pain-related measures of physical, emotional, and social functioning in US military service members with chronic pain.

OBJECTIVE: The purpose of this study was to apply network analysis methodology to better understand the relationships between pain-related measures among people with chronic pain. METHODS: We analyzed data from a cross-sectional sample of 4614 active duty service members with chronic pain referred to 1 military interdisciplinary pain management center between 2014 and 2021. Using a combination of Patient-Reported Outcomes Measurement Information System measures and other pain-related measures, we applied the "EBICglasso" algorithm to create regularized partial correlation networks that would identify the most influential measures. RESULTS: Pain interference, depression, and anxiety had the highest strength in these networks. Pain catastrophizing played an important role in the association between pain and other pain-related health measures. Bootstrap analyses showed that the networks were very stable and the edge weights accurately estimated in 2 analyses (with and without pain catastrophizing). CONCLUSIONS: Our findings offer new insights into the relationships between symptoms using network analysis. Important findings highlight the strength of association between pain interference, depression and anxiety, which suggests that if pain is to be treated depression and anxiety must also be addressed. What was of specific importance was the role that pain catastrophizing had in the relationship between pain and other symptoms suggesting that pain catastrophizing is a key symptom on which to focus for treatment of chronic pain.

Predictors of Sustained Response to Functional Restoration in a Military Population.

INTRODUCTION: The purpose of this study was to determine if improvement in pain impact and functional performance following a functional restoration (FR) program was sustained up to 6 months posttreatment and to identify predictors of sustained improvement. MATERIALS AND METHODS: Secondary analysis of data collected during randomized clinical trial. Study population included 108 US active duty service members who completed an FR program, as well as 3- and/or 6-month follow-up assessments. Primary outcome measure was the NIH Research Task Force (pain) impact score (PIS). Secondary outcome was a composite functional performance measure of treadmill, lifting, and carrying tolerances. Variables analyzed to determine their predictive value included demographics; treatment hours; measures of pain intensity, function, mood, sleep, social satisfaction, pain catastrophizing, kinesiophobia, self-efficacy, pain acceptance, patient activation, functional performance, and neuropathic pain. RESULTS: Mean PIS and functional performance improved significantly immediately following FR, but after 6 months, only improvement in functional performance sustained. Responder analysis showed that 6 months after FR, 42% of participants reported improvement that exceeded the minimal clinically important difference in PIS or functional performance. Predictors of sustained PIS improvement included younger age, absence of neuropathic pain features, less self-rated disability, better baseline functional performance, and worse baseline PIS. Predictors of sustained functional performance improvement included more treatment hours, lower baseline pain catastrophizing, and lower baseline functional performance. CONCLUSIONS: This study supports the investment of treatment time in FR to yield sustained clinically meaningful improvement, as observed in over 40% of this study's military participants. Pretreatment predictors of sustained response included lower pain catastrophizing and absence of neuropathic pain. Further research is needed to determine if treatments that improve pain catastrophizing and neuropathic pain will result in sustained improvement in pain impact and functional performance following FR program participation.

Monitoring and responding to signals of suicidal ideation in pragmatic clinical trials: Lessons from the GRACE trial for Chronic Sickle Cell Disease Pain.

Sickle cell disease (SCD) is a hemoglobin disorder and the most common genetic disorder that affects 100,000 Americans and millions worldwide. Adults living with SCD have pain so severe that it often requires opioids to keep it in control. Depression is a major global public health concern associated with an increased risk in chronic medical disorders, including in adults living with sickle cell disease (SCD). A strong relationship exists between suicidal ideation, suicide attempts, and depression. Researchers enrolling adults living with SCD in pragmatic clinical trials are obligated to design their methods to deliberately monitor and respond to symptoms related to depression and suicidal ideation. This will offer increased protection for their participants and help clinical investigators meet their fiduciary duties. This article presents a review of this sociotechnical milieu that highlights, analyzes, and offers recommendations to address ethical considerations in the development of protocols, procedures, and monitoring activities related to suicidality in depressed patients in a pragmatic clinical trial.

Use of a Person-Centered Narrative Intervention in an Outpatient Palliative Care Setting: A Feasibility Study.

Person-centered narrative interventions offer potential solutions to facilitate a connection between the person receiving care and the person delivering the care, to improve quality of care, and positively impact a patient's biopsychosocial well-being. This single-arm feasibility study investigates patient-reported outcomes and barriers/facilitators to the implementation of an all-virtually delivered person-centered narrative intervention into the person's electronic health record. Overall, electronic data collection for the patient-reported outcomes was feasible. All 15 participants felt participating in the study was "easy" and "enjoyable," and "not a burden." The facilitators of implementation included: "helpful to the clinician," "appreciated looking at me as whole person," "be seen and heard," "had a connection and trust," and "felt comfortable and relaxing." The barriers to implementation included: "completing all the paperwork," "being rushed for time to complete the PCNI," and some "emotion" during collection of narrative. The use of person-centered narrative interventions is a way to deploy dedicated tools to shift dehumanized healthcare delivery to a more humanized person-centered care that treats people as experts in their own life narratives by incorporating their beliefs, values, and preferences into their plan of care.

Distinct Dysphagia Profiles in Patients With Oral Cancer After Surgery.

OBJECTIVES: To determine distinct profiles based on symptom severity in patients undergoing surgery for oral cancer and examine whether these profiles differ by participant characteristics. SAMPLE & SETTING: 300 patients who underwent surgery for oral cancer at two outpatient clinics between June and December 2021. METHODS & VARIABLES: Symptoms were assessed using the MD Anderson Symptom Inventory-Head and Neck Cancer Module. Sociodemographic and clinical characteristics were collected. Latent profile analysis was performed. RESULTS: Five distinct dysphagia profiles were identified, which qualitatively differed regarding co-occurrence patterns of dysphagia, mucus-related symptoms, speech disturbances, and psychoneurologic symptoms. Significant differences were reported in interference to function, number of co-occurring symptoms, time since diagnosis and treatment completion, use of symptom management medications, oral cancer stage and site, and treatment completed. IMPLICATIONS FOR NURSING: Identifying distinct dysphagia profiles can improve patient outcomes and help in planning specific nursing interventions to influence nutritional and functional status in oral cancer survivors. Dysphagia and dry mouth can persist beyond one year post-treatment, so follow-up dysphagia assessments are needed.

Integration of Person-Centered Narratives Into the Electronic Health Record.

BACKGROUND: Care delivery that is not person-centered has been called discordant care . There has been a shift to incorporate more of a person's narrative into their individual healthcare treatment plan to reduce discordant care. Aligning with this shift in healthcare delivery, we developed a person-centered narrative intervention (PCNI) to address existing gaps in delivery of person-centered care. OBJECTIVES: This study aimed to evaluate the feasibility of conducting a randomized study and describe the outcomes of PCNI to usual care on the following person (patient)-reported outcomes: perceptions of the quality of communication with their nurses and their psychosocial and existential well-being. METHODS: This study's design was an Obesity-Related Behavioral Intervention Trials model Phase II proof-of-concept randomized study. The participants were people admitted to an acute care hospital diagnosed with heart failure and/or end-stage renal disease. RESULTS: Despite COVID-19 challenges, the PCNI was feasible in an acute care setting; it showed a moderate positive difference between conditions in the person's perception of their quality of communication and a small positive difference in their perception of feeling heard and understood. For our secondary outcomes of anxiety, depression, and psychosocial illness effect, there were small or no effects in the acute care setting. DISCUSSION: Using a person-centered narrative, such as the PCNI, can help inform delivery of care that incorporates a person's (patient's) beliefs, values, and preferences into their healthcare. This study used a pragmatic approach to evaluate the PCNI in real time in an acute care setting to assess patient-reported outcomes. These positive results in a small sample indicate the need for continued testing of the PCNI. These promising effects require further testing in a Phase III efficacy study within a larger randomized controlled clinical trial.

Experiences of Using Patient Decision Aids for Decisions About Cancer Treatment: A Meta-Aggregation of Qualitative Studies.

BACKGROUND: Inconsistent results have been found regarding the effects of patient decision aids (PtDAs) in supporting patients' decision-making for cancer treatment. OBJECTIVE: This qualitative meta-aggregation presents the experiences of using PtDAs, as perceived by adult patients with cancer, and highlights the components they perceived as important. METHODS: We used the 3-phase process for meta-aggregation suggested by Joanna Briggs Institute to identify published studies with qualitative evidence from CINAHL, Ovid-MEDLINE, APA PsycINFO, and EMBASE databases. The selected studies involved adults with various cancer diagnoses. The phenomenon of interest and the context for this review were people's experiences of using PtDAs for decisions about first-line cancer treatment. RESULTS: A total of 16 studies were included. The authors achieved consensus on 5 synthesized findings about PtDAs: (1) improved understanding of treatment options and patient values and preferences; (2) served as platforms for expressing concerns, obtaining support, and having meaningful conversations with healthcare providers; (3) facilitated active personal and family engagement in decision-making; (4) enabled recall of information and evaluation of satisfaction with decisions; and (5) presented potential structural barriers. CONCLUSIONS: This study used qualitative evidence to demonstrate the usefulness of PtDAs and identify aspects patients with cancer find particularly beneficial. IMPLICATIONS FOR PRACTICE: Nurses play a crucial role in supporting patients and family caregivers throughout the decision-making process for cancer treatment. Patient decision aids that balance complex treatment information with simple language and illustrations or graphs can enhance patients' comprehension. The integration of values clarification exercises into care can further improve patients' decisional outcomes.

Developing an Implementation Blueprint for the NIH HEAL Initiative GRACE Trial: Perspectives on Acupuncture and Guided Relaxation for Chronic Sickle Cell Disease Pain.

Objective: This study aimed to explore perspectives of people living with sickle cell disease (SCD) and SCD clinic providers and staff about the use of acupuncture and guided relaxation for treating chronic SCD pain. Data obtained were to inform an implementation blueprint for an effectiveness implementation clinical trial (GRACE Trial) testing whether acupuncture or guided relaxation reduces chronic pain when compared with usual care. Design: Qualitative research design. Methods: We conducted 33 semistructured interviews with people with SCD and SCD clinic providers and staff. Interviews were transcribed and coded. A deductive content analysis process was used to identify themes. Results: Four themes were identified: Receptivity to Acupuncture and Guided Relaxation, Limited Awareness, Complementary and Integrative Health (CIH) Therapy Preference, and Access Barriers. Both patients and clinic providers and staff were open to the use of acupuncture and guided relaxation for chronic pain treatment. After learning about these CIH therapies, some patients expressed a preference for one therapy over the other. They also discussed their ability to successfully engage with each therapy. There is a need to dispel misconceptions about the therapies by increasing understanding of how each therapy is implemented and functions to reduce pain. We identified several potential barriers that might affect the success of the trial and future health system integration, including time, transportation, and technology. Conclusion: This study is one of the first to present perspectives of both patients with SCD and clinic providers and staff on the use of acupuncture and guided relaxation for chronic SCD pain. Stakeholders' early input and perspectives highlighted that they welcome nonpharmacological CIH therapies. Implementation of a clinical trial and future health system integration will require the addressing misinformation and identifying strategies to overcome access barriers. Clinical trial registration number: NCT04906447.

Examining the Role of Resilience, Posttraumatic Growth, and Quality of Life in Women with Breast Cancer: A Serial Multiple Mediator Model Approach.

OBJECTIVES: It is unclear how resilience and posttraumatic growth help women with breast cancer face cancer-related symptom distress. This study included both resilience and posttraumatic growth as mediators in a serial multiple mediator model to examine changes in the relationship between symptom distress and quality of life among women with breast cancer. DATA SOURCES: We conducted the descriptive, cross-sectional study in Taiwan. Data were collected using a survey that assessed symptom distress, resilience, posttraumatic growth, and quality of life. A serial multiple mediator model examined one direct and three specific indirect effects of symptom distress on quality of life through resilience and posttraumatic growth. All 91 participants reported the presence of symptom distress and moderate levels of resilience. Quality of life was significantly associated with symptom distress (b = -1.04), resilience (b = 0.18), and posttraumatic growth (b = 0.09). The indirect effect of symptom distress on quality of life through resilience alone was statistically significant (b = -0.23, 95% CI -0.44 to -0.07) and statistically greater than the specific indirect effect through resilience and posttraumatic growth combined (b = -0.21, 95% CI -0.40 to -0.05). CONCLUSION: Resilience plays a unique role in reducing the impact of symptom distress on the quality of life among women with breast cancer. IMPLICATIONS FOR NURSING PRACTICE: Given the importance of resilience to quality of life, oncology nurses can assess the resilience of women with breast cancer and help identify available internal, external, and existential resources to strengthen their resilience.

Symptom Cluster Experiences of Patients Operated for Oral Cancer: A Mixed Methods Study.

OBJECTIVE: This convergent mixed methods study aimed to obtain a comprehensive understanding of symptom cluster experiences in patients with oral cancer. Survey and phenomenological interviews were conducted in parallel to identify distinct patient subgroups based on symptom cluster experiences along with their predictors and explore experiences of living with symptom clusters, respectively. DATA SOURCES: A convenience sample of 300 patients with oral cancer who had completed surgery provided the quantitative data, and a maximum variation purposive subsample of 20 participants, drawn from the survey sample, provided the qualitative data. Agglomerative hierarchical cluster analysis was used to identify subgroups, multivariate analyses were done to identify predictors, and thematic analysis was used for patient narratives. CONCLUSION: Almost 94% of the survey participants had two or more co-occurring symptoms. The four most severe and prevalent symptoms were dysphagia, problems with teeth or gums, speech difficulty, and dry mouth. A distinct subgroup consisting of 61% of patients reported severe dysphagia and teeth problems, which was associated with age, oral cancer stage and site. Interviews revealed the causes and the context influencing the perception and response to these symptoms. Thus, the quantitative data provided information on severity and patient subgroups based on symptom cluster experiences, while the qualitative data validated these conclusions and additionally provided in-depth details and meaningful insight on perceived causes and contextual influences of their experiences. This comprehensive picture of symptom cluster experiences can aid in the development of patient-centered interventions for people with oral cancer. IMPLICATIONS FOR NURSING PRACTICE: An interdisciplinary approach to targeting concurrent symptoms incorporating psychological and physical interventions is necessary. Older patients treated for Stage IV cancers and for buccal mucosa tumors are at high-risk of having severe dysphagia postoperatively, and these patients should be targeted for dysphagia interventions. The contextual factors play an important role in developing patient-centered interventions.

A Cross-sectional Study of Regret in Cancer Patients After Sharing Test Results for Pathogenic Germline Variants of Hereditary Cancers With Relatives.

BACKGROUND: Research on whole genome/exome sequencing is increasing worldwide. However, challenges are emerging in relation to receiving germline pathogenic variant results and sharing them with relatives. OBJECTIVE: The aim of this study was to investigate the occurrence of and reasoning related to regret among patients with cancer who shared single-gene testing results and whole exome sequencing with family members. METHODS: This was a single-center, cross-sectional study. The Decision Regret Scale was administered, and descriptive questionnaires were used with 21 patients with cancer. RESULTS: Eight patients were classified as having no regret, 9 patients were classified as having mild regret, and 4 patients were classified as having moderate to strong regret. Reasons patients felt that sharing was the right decision included the following: to allow relatives and children to take preventive measures, the need for both parties to be aware of and ready for the hereditary transmission of cancer, and the need to be able to discuss the situation with others. On the other hand, some patients did not think it was a good decision to share the information because of the associated anxiety. CONCLUSIONS: Regret over sharing test results for pathogenic germline variants of hereditary cancers with relatives tended to be low. The main reason was that patients believed that they were able to benefit others by sharing. IMPLICATIONS FOR PRACTICE: Healthcare professionals need to understand the postsharing perceptions and experiences of patients and support them throughout the sharing process.

An Electronically Delivered Person-Centered Narrative Intervention for Persons Receiving Palliative Care: Protocol for a Mixed Methods Study.

BACKGROUND: In the health care setting, electronic health records (EHRs) are one of the primary modes of communication about patients, but most of this information is clinician centered. There is a need to consider the patient as a person and integrate their perspectives into their health record. Incorporating a patient's narrative into the EHR provides an opportunity to communicate patients' cultural values and beliefs to the health care team and has the potential to improve patient-clinician communication. This paper describes the protocol to evaluate the integration of an adapted person-centered narrative intervention (PCNI). This adaptation builds on our previous research centered on the implementation of PCNIs. The adaptation for this study includes an all-electronic delivery of a PCNI in an outpatient clinical setting. OBJECTIVE: This research protocol aims to evaluate the feasibility, usability, and effects of the all-electronic delivery of a PCNI in an outpatient setting on patient-reported outcomes. The first objective of this study is to identify the barriers and facilitators of an internet-based-delivered PCNI from the perspectives of persons living with serious illness and their clinicians. The second objective is to conduct acceptability, usability, and intervention fidelity testing to determine the essential requirements for the EHR integration of an internet-based-delivered PCNI. The third objective is to test the feasibility of the PCNI in an outpatient clinic setting. METHODS: Using a mixed method design, this single-arm intervention feasibility study was delivered over approximately 3 to 4 weeks. Patient participant recruitment was conducted via screening outpatient palliative care clinic schedules weekly for upcoming new palliative care patient visits and then emailing potential patient participants to notify them about the study. The PCNI was delivered via email and Zoom app. Patient-reported outcome measures were completed by patient participants at baseline, 24 to 48 hours after PCNI, and after the initial palliative care clinic visit, approximately 1 month after baseline. Inclusion criteria included having the capacity to give consent and having an upcoming initial outpatient palliative care clinic visit. RESULTS: The recruitment of participants began in April 2021. A total of 189 potential patient participants were approached via email, and 20 patient participants were enrolled, with data having been collected from May 2021 to September 2022. A total of 7 clinician participants were enrolled, with a total of 3 clinician exit interviews and 1 focus group (n=5), which was conducted in October 2022. Data analysis is expected to be completed by the end of June 2023. CONCLUSIONS: The findings from this study, combined with those from other PCNI studies conducted in acute care settings, have the potential to influence clinical practices and policies and provide innovative avenues to integrate more person-centered care delivery. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/41787.