Symptom Experience Of Patients Research Articles

Symptom experiences and influencing factors in patients undergoing chemotherapy for gastrointestinal cancers: a qualitative study.

To explore the symptom experiences and influencing factors of gastrointestinal (GI) cancer patients on chemotherapy (CTX) in China. Semi-structured interviews were conducted with 13 GI cancer patients undergoing CTX. Following the Colaizzi 7-step analysis method, the interview data were read carefully, meaningful statements related to the research questions were extracted, coded, collected, and described in detail, and the authenticity of the theme was verified. Nine themes were grouped into two main areas including the characteristics of symptom experiences and influences on symptom experiences. The symptom experiences of patients undergoing CTX for GI cancer is poor and influenced by multiple factors. Nurses need to pay attention to the assessment and monitoring of CTX-related symptoms, improve symptom recognition, enhance doctor-patient communication and social support, explore intelligent management methods, and increase the efficiency of healthcare services to improve patients' symptom experience.

Identification of distinct symptom profiles in prostate cancer patients with cancer-related cognitive impairment undergoing androgen deprivation therapy: A latent class analysis

ObjectiveTo identify latent classes of cognitive impairment and co-occurring symptoms (fatigue, pain, sleep disturbance, depression) as clusters in patients with prostate cancer undergoing androgen deprivation therapy and to explore the predictors among distinct latent classes. MethodsA total of 228 patients with prostate cancer were recruited in this cross-sectional study. The assessment instrument included the Perceived Cognitive Impairment Scale, the Fatigue Severity Scale, the Athens Insomnia Scale, the Brief Pain Inventory, the Patient Health Questionnaire-9, the UCLA Loneliness Scale, the International Physical Activity Questionnaire - Short Form, the Charlson comorbidity index, and General Information questionnaire. The identification of different patient subgroups was done by the latent class analysis. ResultsThe study identified three distinct latent classes: all low symptoms (class 1, 32%), high depression symptoms (class 2, 37.7%), and high physical symptoms (fatigue, sleep disturbance, and pain) with high cognitive impairment (class 3, 30.3%). Patients who had higher Charlson comorbidity index (P = 0.003) scores were more likely to be classified in class 3. Patients with higher loneliness scores (P < 0.001; P < 0.001) were significantly more likely to fall into class two or three than in class 1. However, having a higher level of physical activity (P = 0.014; P < 0.001) increased the likelihood of being in class 1. ConclusionsThis study exhibited the inter-individual variability of symptom experience in prostate cancer patients with cognitive impairment undergoing androgen deprivation therapy. The result suggests that more emphasis should be placed on screening for fatigue, sleep disturbance, and pain, and future interventions should focus on loneliness and physical activity.

Clinical benefits of novel non-nucleoside reverse transcriptase inhibitors: A prospective cohort study.

The efficacy and safety of ainuovirine+lamivudine+tenofovir (ANV+3TC+TDF) and efavirenz+lamivudine+tenofovir (EFV+3TC+TDF) have been confirmed in previous clinical trials; however, there are no related studies on patient-reported outcomes. This study aimed to evaluate the effectiveness and safety of these 2 antiretroviral therapy regimens and to understand the patient's symptom experience and subjective experience of sleep quality through patient-reported outcomes. This is a single-center prospective cohort study with 243 patients evaluated from October 1, 2021 to June 30, 2022. Virological effectiveness and patient-reported outcomes results were analyzed. The primary endpoint was the proportion of HIV viral load <50 copies/mL (virological suppression rate) at 48 weeks and the changes in the HIV symptom index and Pittsburgh sleep quality index. The virological suppression rates in the ANV+3TC+TDF and EFV+3TC+TDF groups were 83.6% (102/122) and 87.6% (106/121), respectively, at 48 weeks. In the ANV+3TC+TDF group, the scores of HIV symptom index and pittsburgh sleep quality index in the 48th week were lower than the baseline level (p < 0.05). Logistic regression results showed that the baseline regimen EFV+3TC+TDF was a risk factor for dizziness/lightheadedness (odds ratio = 3.153, 95% confidence interval: 1.473-6.748, p = 0.003), sadness/depression odds ratio = 2.404, 95% confidence interval:1.188-4.871, p = 0.015), and difficulty sleeping (odds ratio = 2.802, 95% confidence interval: 1.437-5.463, p = 0.002) at 48 weeks. Both regimens showed good virological effectiveness; however, compared with ANV+3TC+TDF, the EFV+3TC+TDF regimen reduced the prevalence of HIV-related symptoms.

Abstract 7440: Symptom network analysis and unsupervised clustering of a cohort of oncology patients identifies drivers of symptom burden and patient subgroups with distinct symptom patterns

Abstract Purpose: Inter-individual variability in oncology patients’ symptom experiences poses significant challenges in prioritizing symptoms for targeted intervention(s). In this study, computational approaches were used to unbiasedly characterize the heterogeneity of the symptom experience of oncology patients to elucidate their symptom patterns and drivers of symptom burden. Methods: Severity ratings for 32 symptoms on the Memorial Symptom Assessment Scale from 3088 oncology patients were analyzed. Gaussian Graphical Model symptom networks were constructed for the entire cohort and subgroups identified through unsupervised clustering of symptom co-severity patterns. Symptom network characteristics were analyzed and compared using permutation-based statistical tests. Demographic and clinical characteristic differences between subgroups were assessed using multinomial logistic regression. Results: Network analysis of the entire cohort revealed three core symptom clusters: constitutional, gastrointestinal-epithelial, and psychological. Lack of energy was identified as central to the network, suggesting that it plays a crucial role in driving overall symptom burden and may be the most salient to target clinically. Unsupervised clustering of patients based on shared symptom co-severity patterns identified six patient subgroups with distinct symptom patterns and demographic and clinical characteristics. The first subgroup represented a baseline cohort of patients who are most affected by common constitutional symptoms of cancer care. The second subgroup represented patients with severe overall symptom burden. The third subgroup represented patients primarily experiencing neuropathy. The fourth subgroup represented patients with advanced disease and treatment-related symptoms but relatively high quality of life. The fifth subgroup represented younger patients with pronounced psychological disease burden. The sixth subgroup represented patients with minimal symptom burden. Age, treatment status, and Karnofsky Performance Score were the strongest determinants of subgroup membership, but their interplay (in one case even with ethnicity) reaffirms the complex multi-factorial nature of the symptom experience. For each subgroup, symptoms with the highest network centralities that should be prioritized for management were identified. Conclusions: This study provides a translational research framework for clinicians to better understand and address the symptom care needs of oncology patients. The framework combines unbiased stratification of patients and in-depth modeling of symptom relationships to capture the heterogeneity in their experiences. When validated, the identified core symptoms and associated clinical determinants may inform precision-based symptom management. Citation Format: Brandon H. Bergsneider, Terri S. Armstrong, Yvette P. Conley, Bruce Cooper, Marilyn Hammer, Jon D. Levine, Steven Paul, Christine Miaskowski, Orieta Celiku. Symptom network analysis and unsupervised clustering of a cohort of oncology patients identifies drivers of symptom burden and patient subgroups with distinct symptom patterns [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 7440.

Network evolution of core symptoms after lung cancer thoracoscopic surgery:A dynamic network analysis

ObjectivesTo investigate relationships between various symptoms occurring 1–2 and 5–6 days following days after thoracoscopic surgery, to identify core symptoms, and to monitor changes in core symptoms over time following lung cancer thoracoscopic surgery. MethodsWe evaluated symptoms using the Anderson Symptom Scale (Chinese version) and the Lung Cancer-Specific Symptoms Template in 214 lung cancer patients hospitalized in the Department of Thoracic Surgery of a provincial hospital in Jiangsu Province from March 2023 to September 2023. Data was collected at 1–2 days and 5–6 days postoperatively. Symptom networks were constructed for each time point, and centrality indicators were analyzed to identify core symptoms while controlling for influencing factors. ResultsAccording to the network analysis, fatigue (rs = 26.00、rc = 0.05、rb = 1.02) had the highest strength, closeness, and betweenness in the symptom network 1–2 days after lung cancer surgery. At 5–6 days after surgery, shortness of breath (rs = 27.00) emerged as the symptom with the highest strength, fatigue (rc = 0.04) had the highest closeness, and cough (rb = 1.08) ranked highest in betweenness within the symptom network. ConclusionFatigue stands out as the most core symptom in the network 1–2 days after lung cancer surgery. Shortness of breath, fatigue and cough are the most core symptoms in the symptom network 5–6 days after surgery. Therefore, clinical staff can improve the postoperative symptom experience of lung cancer patients by developing symptom management programmes tailored to these core symptoms.

The Patient Symptom Experience After Tisagenlecleucel and Lisocabtagene Maraleucel CAR T-Cell Therapy for Lymphoma

ObjectivesChimeric Antigen Receptor (CAR) T-cell treatment is associated with several unique toxicities, and the short-term symptom trajectory in the immediately after therapy is well-documented. However, little is known about patients’ long-term symptom experience. The study aimed to elicit the symptom experience of adult patients in remission after CAR T-cell therapy for B cell lymphoma. Data SourcesA qualitative descriptive design with thematic analysis was utilized. Recruitment occurred at a tertiary academic medical center using the following inclusion criteria: adult recipient of CAR T-cell therapy for B-cell lymphoma between 3 and 12 months prior to enrollment, and currently in remission. Semi-structured interviews were conducted, transcripts were inductively coded, and team members met weekly to ensure rigor. The final sample included 10 patients: Seven received tisagenlecleucel and three received lisocabtagene marleucel and were a median of 169 days post-infusion and 65 years of age. ConclusionsParticipants continued to report symptoms, including fatigue, neuropathy, low endurance, insomnia, memory problems, and pain. Most symptoms improved over time. Some symptoms interfered with social activities, work, driving, and physical activity, though participants reported that most symptoms existed prior to CAR T-cell therapy, and overall, found CAR T-cell therapy acceptable. Implications for Nursing PracticePatients in remission after CAR T-cell therapy often continue to experience symptoms. Nurses should continue to assess this growing patient population and determine if patients require additional symptom management or support. Further research is needed to understand long-term symptom trajectory and associations with prior lines of therapy and CAR T-cell therapy.

The Symptom Experience of Patients with Advanced Melanoma Undergoing Immune Checkpoint Inhibitor (ICI) Therapy

ObjectivesThe advent of immune checkpoint inhibitor (ICI) therapy has vastly improved outcomes for patients with advanced melanoma. However, the symptom burden and intensity with their impact on quality-of-life (HRQoL) and functionality are heterogeneous and unpredictable. We used descriptive exploratory content analysis from interviews to capture the patient experience after they had completed quantitative data collection of their symptom burden and interference with the use of two patient-reported outcome (PRO) instruments. Data SourcesParticipants from a single center with advanced melanoma (n = 19) who are undergoing ICI therapy completed the Modified MD Anderson Symptom Inventory and Functional Assessment of Cancer Therapy-Melanoma and recorded semistructured interviews. Interpretive description informed the inductive and iterative analysis approach. ConclusionParticipants had a heterogenous experience of ICI and melanoma-related symptoms: distress (84%), fatigue (68%), rash or skin changes (53%), pain (30%), diarrhea (30%), itching (26%), and shortness of breath (21%), with varying interference within HRQoL domains, mood (47%), relations with other people (26%), and activity (21%). Some noted a lack of physical interference (79%). Uncertainty was a pervasive theme in the interviews (68%) despite the majority having positive thoughts about ICI therapy (58%) and expectations of the success of therapy (53%). The physical and emotional burden of a melanoma diagnosis, undergoing therapy, and the uncertainty of the outcomes are pervasive for patients. Implications for Nursing PracticeCommunication surrounding the diagnosis, prognosis, treatment options, and outcomes need to be clear and acknowledge there are unknowns. Nurses may benefit from using a validated PRO instrument to help document and understand the patient's symptom experience while undergoing ICI therapy.

2516. Development of a de novo Patient-Reported Outcome (PRO) Measure to Assess the Impacts of Disseminated Coccidioidomycosis [Valley Fever] on Patients Living with the Condition

Abstract Background Extrapulmonary or disseminated coccidioidomycosis (cocci) is a rare, severe form of fungal disease acquired by inhaling spores of Coccidioides spp., a dimorphic fungus endemic in the southwest United States (US) and parts of Central/South America. Currently, there are no measures that assess the patient experience of health-related quality of life (HRQL) impacts associated with disseminated cocci. Preliminary work to develop a disease-specific PRO has been completed (i.e., literature review, conceptual model development [fig 1], clinician interviews). The focus of this research was to gather qualitative evidence directly from patients living with disseminated cocci. Initial draft of a Patient-Centered Conceptual Model of Coccidioidomycosis A conceptual model of the symptoms and impacts of coccidioidomycosis was developed by analyzing 29 online patient stories after a literature review revealed qualitative, patient experience research was nonexistent in fungal infections. Methods Concept elicitation (CE) interviews were conducted with 25 patients with chronic, symptomatic disseminated cocci. Audio recordings of 60–110-minute telephone interviews were transcribed and qualitatively analyzed using NVivo 1.6. Saturation analysis was performed to determine if all concepts had emerged such that additional interviews would not add to the findings. Item generation meetings were then held between F2G, COS and a patient advocate to develop draft items reflecting the HRQL impacts of the condition. Results Thirteen (52.0%) CNS/multi-site and 12 (48.0%) non-CNS/multi-site patients participated; 18 (72.0%) were English-speakers and 7 (28.0%) were native Spanish-speakers; 3 (12.0%) were Black and 12 (48.0%) were Hispanic. Key impacts were identified across 5 domains, all reaching saturation (fig 2,3): physical function (physical activity, walking, climbing stairs, standing), activities of daily living (household chores, self-care), cognitive function (memory, focus), social-role impacts (work/school, socializing) and emotional (depression, anxiety). No major differences were found between CNS/non-CNS and English/Spanish patient experiences. Physical function and ADL Impacts Reported by Patients with Disseminated Cocci: Subgroup Analyses 1 CE interview results showed disseminated patients were significantly impacted in their physical functioning and activities of daily living. A surprising result was that in general, CNS and non-CNS patients had similar impact experiences as a result of disseminated cocci. (Total number of patients who experienced the impact is shown at the top of the column and the number of patients within each subgroup who experienced the impact is shown within the column). Social/Role, Emotional and Cognitive Impacts Reported by Patients with Disseminated Cocci: Subgroup Analyses 2 Disseminated patients were also affected socially, cognitively and emotionally, as well as in their roles professionally, and as caregivers and providers. Impact on communication consisted of difficulty retrieving words and following conversation. Cognitive impacts experienced by non-CNS patients were more prevalent than anticipated. Conclusion The CE interviews provided rich qualitative data on symptom and impact experiences of patients with disseminated cocci. The findings were used to draft a disease-specific PRO measure assessing HRQL impacts of disseminated cocci, consisting of 19 items across 5 domains (fig 4). Cognitive debrief interviews are now planned with disseminated cocci patients and clinicians to further evaluate the validity of the measure. Hypothesized Conceptual Framework of PRO measure 'Patient-Reported Impacts of Disseminated Coccidioidomycosis (Valley Fever)' Conceptual frameworks represent how a PRO measure may generate a score, broadly illustrating which patient experiences will be measured and how they will be measured. Disclosures Emma L. Harvey, BSc, MBBS, MRCP, FFPM, F2G Ltd: Employee|F2G Ltd: Stocks/Bonds Mark Bresnik, MD, F2G, Ltd.: Stocks/Bonds Elliott Blatt, MPH, F2G Ltd: Advisor/Consultant Rob Purdie, n/a, Clinical Outcomes Solutions: Consulting

An exploration of proactive health oriented symptom patterns in patients undergoing percutaneous coronary intervention with stent implantation: A mixed-methods study protocol.

Coronary Heart Disease (CHD) is one of the most prevalent chronic diseases worldwide. Currently, percutaneous coronary intervention (PCI) with stent implantation is the main clinical treatment for CHD, and patients can achieve better outcomes after stenting. However, adverse cardiovascular events continue to recur, ultimately failing to yield good results. Several symptoms exist after stenting and are associated with health outcomes. Little is known about the symptom patterns of patients during the different postoperative periods. Therefore, this study aims to explore the dynamics of symptoms and clarify the experiences of post-stenting in patients during different periods, which may help the delivery of more specific patient management and improve survival outcomes in the future. A mixed method (quantitative/qualitative) design will be adopted. Longitudinal research, including surveys regarding three different periods, will be sued to describe the symptom patterns of patients undergoing PCI with stent implantation, clarifying their focused symptom problems during different time periods or in populations with different features. Qualitative individual interviews aim to understand the feelings, experiences, opinions, and health conditions of patients post-stenting, which can explain and supplement quantitative data. Quantitative data will be analyzed using descriptive statistics, latent class analysis (LCA), and latent translation analysis (LTA). Qualitative data will be analyzed using content analysis. This study is the first study to explore the symptom patterns and experiences of patients in various domains after stent implantation using a novel design including quantitative and qualitative methods, which will help the delivery of more specific patient management, reduce the recurrence of adverse cardiovascular events, and improve survival outcomes in the future. It is also meaningful to use PROMIS profile-57 to help patients to proactively focus on their health problems, promote health literacy, and incorporate active patient participation into health management, which is a successful transition from passive medical treatment to active management.

Emotional, mental health and physical symptom experience of patients hospitalized with COVID-19 up to 3 months post-hospitalization: A longitudinal study.

To explore emotional, mental health and physical symptoms up to 3 months after discharge for adults hospitalized with COVID-19. 10%-30% of adults with COVID-19 experience physical and psychological symptoms 3 months or more following infection. Knowing symptoms can help direct early intervention. A longitudinal descriptive design to study COVID-related symptoms 2 weeks, 6 weeks and 3 months after hospitalization. Sixty-six patients were recruited from a hospital system in Midwestern US (October 2020-May 2021). Participants self-reported demographics, hospital and post discharge symptoms, PROMIS measures (depression, anxiety, fatigue, cognitive function, satisfaction social roles, sleep disturbance) and Impact of Event Scale-Revised (IES-R). Hospital length of stay, comorbidities, lowest oxygen saturation, respiratory support and resources used were collected. Descriptive and nonparametric statistics described the sample and identified correlations between variables. The STROBE checklist was used. Data from 1 (T1) and 3 months (T2) post discharge were analysed (N = 52). A majority were female, white and married; 96% experienced ≥1 COVID-related symptoms at T1; 85% at T2. Fatigue was most prevalent, followed by shortness of breath, muscle weakness and foggy thinking. More physical symptoms during hospitalization correlated positively with number of symptoms at T1 and T2; a majority stated these impacted their normal routine 'somewhat' or 'a lot'. T1 depression highly correlated with all T2 PROMIS and IES-R scores and number of physical symptoms. More symptoms at T1 were associated with worse fatigue, lower cognitive function and lower satisfaction with social roles at T2. This study adds to the growing knowledge of mental, physical and emotional symptoms and relationships between these early after hospitalization with COVID-19. Findings can help identify holistic nursing interventions to improve health and mitigate symptoms for people with long COVID. Patients contributed via study participation.

Improving quality of life and symptom experience in patients with metastatic breast cancer: A systematic review of supportive care interventions.

The prognosis for individuals with metastatic breast cancer (MBC) has improved in recent decades. This expanding cohort has unique psychological and psychosocial needs, yet targeted supportive care interventions are underdeveloped. This systematic review seeks to summarise the available evidence on the effectiveness of supportive care interventions in improving quality of life and symptom experience of individuals living with MBC so that services can be developed to address the unmet needs of this cohort in future. Academic Search Complete, CINAHL, ERIC, Medline and SocINDEX were searched for publications investigating the effect of supportive care interventions specifically targeted at addressing the quality of life or symptom experience of individuals living with MBC. Three reviewers independently screened and selected studies. Quality appraisal and assessed risk of bias were carried out. The search yielded 1972 citations. Thirteen studies met the inclusion criteria. Interventions included psychological (n=3), end of life discussion and preparation (n=2), physical activity (n=4), lifestyle (n=2), and medication self-management support (n=2). Three studies reported significant improvement in quality of life, two of which reported improved symptom experience in at least one symptom. Three further physical activity interventions showed improvement in at least one of the symptoms investigated. Studies reporting a statistically significant effect on quality of life and improved symptom experience were extremely heterogenous. We can tentatively suggest that multimodal and frequently administered interventions are effective, with physical activity interventions positively impacting on symptom experience, however further research is required.

The Burden of Pruritus Associated With CKD: A Mixed Methods Analysis Among Patients Undergoing Dialysis

Despite its prevalence and distress to patients, chronic kidney disease-associated pruritus (CKD-aP) is poorly characterized, which may contribute to the condition's underdiagnosis and inadequate management. This study aimed to understand the symptom experience of patients with CKD-aP and the extent to which pruritus impacts their lives. Mixed methods study including one-on-one qualitative interviews and completion of the Skindex-10 Questionnaire (measuring itch-related quality of life). A total of 23 patients undergoing hemodialysis and reporting pruritus at 4 dialysis centers in the United States. Interviews followed a semistructured guide that included targeted and follow-up questions to elicit discussion of patients' symptoms of pruritus, including frequency and variability, impact on activities of daily living, and emotional and social functioning. Interviews were digitally audio-recorded. A coding dictionary was developed from transcripts to analyze themes and concepts. Participants described their itch with various terms, including "numbness," "pain," and "tingling" on their skin. Itch affected multiple areas but especially the back, usually occurred daily, and was often worse at night. For some, itching was a constant experience. Patients relieved their itch through scratching and various off-label treatments; some reported skin damage from excessive scratching and most indicated treatments provided limited relief. Pruritus considerably disrupted physical function, including sleep, daily activities, social functioning and relationships, and emotional and psychological wellbeing. All participants reported being bothered by their itching during the past week on the Skindex-10 Questionnaire. All participants were from the United States, so the findings may not be generalizable to other countries. Although symptom experience varies considerably, CKD-aP causes severe distress for many patients undergoing hemodialysis and can profoundly impair their quality of life. The results of this study show the impact of itch from patients' perspectives and highlight the need for greater awareness and better management of this condition. Patients with chronic kidney disease often experience itching, or pruritus, but its importance to patients is regularly overlooked. This study used one-on-one interviews to investigate patients' experiences of chronic kidney disease-associated pruritus and how it impacts their lives. We found that participants experienced itch on various body areas and used different words to describe their itch (eg, "numbness" and "pain"). Some reported skin damage from excessive scratching, and many used off-label treatments and other interventions (eg, rubbing alcohol and multiple showers daily), which provided limited relief. For many, itching was experienced daily and severely disrupted sleep, daily activities, interactions with others, and mental wellbeing. These findings reveal chronic kidney disease-associated pruritus severely impacts patients and highlights the need for improved management of this condition.

Understanding the late immune checkpoint inhibitor (ICI) symptom experience using an electronic patient reported outcomes (ePRO) app-based platform: The immunowave study.

e24067 Background: Chronic toxicities of ICI cancer therapy remain largely uncharacterized. With increasing use of ICIs in early cancer stages, the number of cancer patients exposed to ICI therapy will continue to increase. We undertook a smartphone app-based ePRO pilot study to examine symptom experience of patients with prior or ongoing (≥ 6 months) treatment with ICIs. Methods: Eligible patients had a history of advanced skin cancer or kidney cancer treated with ICI therapy (adjuvant or metastatic setting) with ongoing, clinician-assessed cancer control. Patients may have completed a course of ICI therapy or continued on therapy if ≥ 6 months had passed since initiation. We conducted a single-center, observational, prospective cohort study where participants completed weekly ePRO assessments measuring 11 PRO-CTCAE symptoms over 12 weeks. We assessed the feasibility of this app-based ePRO monitoring strategy (defined as the fraction of weekly assessments completed) and described the prevalence and severity of symptoms in this population. Results: Forty-seven patients (77% melanoma, 15% renal cell carcinoma, 8% non-melanoma skin cancer) consented to the study. At enrollment, 70% were on active therapy while 30% had completed therapy. 38% received adjuvant therapy and 62% were treated in a metastatic setting. The majority (N = 43, 91%) completed ≥ 1 weekly ePRO assessment (median 8, IQR 5.5-10). These 43 patients were included in the analysis. 61% (317/516) of the scheduled ePRO symptom assessments were completed. The prevalence, severity, and persistence of symptoms are noted in the Table. Fatigue and joint pain were most commonly reported (85% and 66% of assessments, respectively) and most commonly Grade ≥ 3 symptoms (23%, 20%). More than half of the patients reported persistent (present ≥ 50% of a patient’s assessments completed) symptoms of fatigue, joint pain, muscle pain, itchiness, rash, depression, anxiety, and numbness. Conclusions: Weekly app-based ePRO monitoring allowed for longitudinal assessment of symptoms with reasonable completion rates. Patients reported frequent, persistent, and sometimes severe symptoms, most notably fatigue, mental health symptoms, and musculoskeletal symptoms. This study suggests that patients during and after ICI therapy may experience high symptom burden, warranting further study in a larger population with longer study duration to identify candidate symptoms for interventions. [Table: see text]

The symptom experience of newly diagnosed Chinese patients with Crohn's disease: A longitudinal qualitative study.

To longitudinally explore the symptom experience of Chinese patients with Crohn's disease within the first year following their diagnosis. A longitudinal qualitative study. Eighteen newly diagnosed Chinese patients with Crohn's disease were recruited through purposive sampling. Semi-structured interviews were conducted at four time points: soon after diagnosis, 3, 6 and 12 months post-diagnosis. Data were collected between January 2021 and February 2022. Conventional content analysis was used for data analysis of each time point. Afterwards, the data of each time point were compared longitudinally. COREQ checklist was followed. Three themes and eight sub-themes were formed through analysis: feelings towards symptoms (symptoms make me feel uneasy, symptoms make me feel inferior and symptoms make me feel helpless); acceptability of symptoms (difficult to accept, have to accept, be able to accept); functions of symptoms (assessing disease conditions and treatment effects, warning of disease management). Overall, the negative emotions related to symptoms gradually decreased over time, and the patient's acceptance of symptoms increased within the first year following diagnosis. In addition, when the disease was in remission after treatment, the warning function of symptoms gradually weakened. The process of how patients accept their symptoms found in this study provides a basis for nurses to improve patients' acceptance of symptoms and reduce their symptom-related negative emotions. This study also emphasizes the phenomenon that patients gradually ignore some symptoms with their increased acceptance level, which warrants additional health education to strengthen their awareness of self-management. No patient or public contribution was required to design or undertake this study. Patients contributed only to the data collection and member checking.

The Symptom Experience and Functioning of Non-Hospitalized COVID-19 Patients Within the First 20 days.

The adverse physical, psychological, and mental health consequences associated with COVID-19 illness are well-documented. However, how specific symptoms change over time and how COVID-19 affects one's day-to-day activities of daily living (ADL), Quality of Life (QoL), sleep quality, and fatigue severity are not well described. This longitudinal and descriptive study examined the changes in COVID-19 symptoms, ADL, QoL, sleep quality, and fatigue severity within the first 20 days. A convenience sample (n = 41) of non-hospitalized SARS-CoV-2 positive patients were recruited and followed for 20 days. Participants completed self-report measures: COVID-19 symptoms, ADL, QoL, sleep quality, and fatigue severity at days: 1, 10, and 20 following a diagnosis. Findings revealed that symptoms decreased over 20 days (p < .001). In parallel with the decrease in symptoms, QoL and ADL improved over 20 days (p < .05). However, sleep quality and fatigue severity did not improve within 20 days (p > .05). Our findings contribute to the growing evidence that COVID-19 symptoms can linger, especially fatigue and sleep quality, that affect overall day-to-day functioning for at least 20 days after diagnosis. To mitigate the effect of COVID-19 on QOL and ADL, findings underscore the need for clinicians to work collaboratively with patients to develop a symptom management plan for a variety of symptoms including fatigue and sleep quality. Beginning to repurpose existing self-management strategies for the longer term COVID-19 symptoms could be beneficial and help to optimize patient outcomes. Future work should examine these variables over a longer timeframe and among different samples of non-hospitalized patients.

Development and evaluation of the Acromegaly Symptom Diary

BackgroundPatient-reported outcome (PRO) measures are important to consider when evaluating treatments, yet there are no PRO measures for patients with acromegaly that have been developed in accordance with US Food and Drug Administration guidance. Acromegaly is a rare, chronic condition caused by hypersecretion of growth hormone. Disease activity is monitored by measurement in serum of growth hormone and insulin-like growth factor-I. The objectives of this research were to develop the Acromegaly Symptom Diary (ASD), establish a scoring algorithm, and evaluate the psychometric measurement properties of the ASD.MethodsSemistructured interviews consisting of concept elicitation and cognitive debriefing components were conducted with 16 adult participants with acromegaly. The concept elicitation component identified symptoms important to individuals with acromegaly. The cognitive debriefing component gathered information about the participants’ experience with each proposed item of the ASD, their thought process for answering each question, and their interpretation of the items. The psychometric properties of the draft ASD were then evaluated using data from the ACROBAT Evolve (NCT03792555; n = 13) and ACROBAT Edge (NCT03789656; n = 47) clinical trials.ResultsThe 16 participants from the interviews described ongoing symptoms, with the most frequently reported being joint pain (n = 13) and fatigue (n = 12), followed by swelling (n = 8), headache (n = 7), and mood swings (n = 6), and were able to interpret and understand the ASD items and had no issues with the 24-hour recall period. From data collected in the clinical studies, the psychometric properties of internal consistency (0.91 − 0.80), test-retest reliability with item-level and total ASD scores (> 0.70), baseline construct validity (r ≥ |0.38|) across scales, and responsiveness to change (r = 0.52–0.56) were supported for the ASD. The proposed preliminary threshold range to characterize a meaningful change from the patients’ perspective for the ASD total is a 4- to 6-point change for improvement or worsening out of a total score of 70.ConclusionThese findings provide qualitative and quantitative evidence to support the ASD as fit for the purpose of evaluating the symptom experience of patients with acromegaly in clinical trials.

Experience of living with symptom clusters in postoperative pancreatic cancer patients

The purpose of this study was to describe symptom clusters (SCs), and symptom experiences in early postoperative patients with pancreatic cancer who are recovering at home. From October 2021 and April 2022,15 patients following pancreatic cancer surgery were recruited from a tertiary hospital in Jiangsu Province by maximum variation sampling. Semi-structured interviews were performed to collect data and thematic analysis was conducted to analyze the data. Three themes were extracted from the data. The first theme "difference in symptom perception and cognition" illustrated factors such as patient knowledge, expected recovery status, and risk perception could influence patient symptom experience. Most patients actually reported fewer and less severe symptoms than previous studies. The second theme "the results of symptom cluster" demonstrated anorexia-distress SC, bowel-digestive related SC and sleep disturbance related SC, and anorexia-distress SC should be considered as the priority SC given its multidimensional significance for patients. The last theme described the patient's positive attitudes, behaviours and barriers to coping with symptoms, namely "symptom self-management experience". There are differences in the perception and interpretation of SCs in postoperative pancreatic cancer patients. Understanding the meaning of individual differences in the experience of symptoms can assist patients in the management of SCs. Medical staff should combine patient self-management strategies and evidence-based data to provide appropriate support at different stages to improve patient symptom management and quality of life.

Post-Traumatic Distress and Symptom Experience in Patients With Head and Neck Cancer-Related Tracheostomy and Family Caregivers.

To describe post-traumatic distress and identify associated factors in patients with head and neck cancer-related tracheostomy and their family caregivers. This observational study assessed 22 patients with surgically managed head and neck cancer-related tracheostomy and 17 family caregivers at a comprehensive cancer center. Instruments included the Impact of Event Scale-Revised, the Memorial Symptom Assessment Scale, and the Patient-Reported Outcomes Measurement Information System Depression 6a Short Form scale. Post-traumatic distress related to tracheostomy and general depression in patients and family caregivers was highly prevalent. An increased level of physical symptoms was moderately correlated with higher levels of post-traumatic distress. Patients who experienced higher symptom burden may also suffer from post-traumatic distress related to tracheostomy. Oncology nurses can implement post-traumatic distress screening in patients and their family caregivers.

Experiences of bowel symptoms in patients with rectal cancer after sphincter-preserving surgery: a qualitative meta-synthesis.

This study is to identify and synthesize the available evidence of bowel symptom experiences of patients with rectal cancer after sphincter-preserving surgery (SPS). This qualitative meta-synthesis was conducted following the Joanna Briggs Institute (JBI) qualitative systematic review methodology and reported following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Seven databases were searched on 22 December 2021. The selected studies were reviewed by two independent reviewers, and disagreements were resolved by discussion or with a third reviewer. Seven qualitative articles were included in the meta-synthesis with 192 total rectal cancer patients. The review summarized 53 qualitative findings into three synthesized findings: (a) Patients experienced bowel symptoms and triggered additional physiological problems, and they underestimated bowel symptoms; (b) patients had many negative emotions, and their daily life and social interaction were disturbed; and (c) patients adopted strategies to adapt or control their bowel symptoms. According to the ConQual evidence grading approach, the confidence of the synthesized findings was rated as moderate to low. The bowel symptoms of patients with rectal cancer after SPS have troubled their lives. Timely acquisition of symptom-related knowledge and enhancement of their coping abilities are important for the control and management of bowel symptoms. Healthcare professionals should clearly understand the bowel symptoms that patients may experience after SPS and provide supportive care for patients to improve patients' self-management abilities and quality of life. PROSPERO: CRD42021242610.

Understanding the symptom experience and self-management strategies of adult hematopoietic stem cell transplantation patients during hospitalization: findings from a qualitative longitudinal study.

The aim of this study was to explore the symptom experience and self-management strategies of adult hematopoietic stem cell transplantation patients during hospitalization. This was a qualitative descriptive study. A heterogeneous sample of 19 patients who underwent hematopoietic stem cell transplantation from May to October 2021 were enrolled in the study. Semi-structured interviews were conducted at four time points during hospitalization, providing a total of 64 interview datasets. Four themes and 11 subthemes reflecting the symptom experience and self-management strategies of adult hematopoietic stem cell transplantation patients during hospitalization were observed. The four themes were (1) unexpected symptom burden: dynamic, disturbing, co-occurring, and correlative; (2) emotional complexity at different periods; (3) internal predicament: ineffectiveness of symptom management; and (4) external strength: desire for support from multiple sources. Hematopoietic stem cell transplantation patients experienced a complex and dynamic array of symptoms from admission to discharge, and they experienced the dual forces of internal predicament and external strength in symptom self-management during hospitalization. The findings of this study emphasize the need for a deeper understanding and precise management of the symptom experience of adult hematopoietic stem cell transplantation patients during hospitalization. Hematopoietic stem cell transplantation nurses need to assess symptoms on an ongoing basis; educate patients on ways to perceive, express, and self-manage multiple symptoms; and develop patients' self-symptom management skills to enhance their symptom relief and quality of life.