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Symptom Prioritization among Adults Receiving In-Center Hemodialysis: A Mixed Methods Study.

ABSTRACT: BACKGROUND AND OBJECTIVES:Individuals receiving in-center hemodialysis experience a high symptom burden that detrimentally affects their quality of life. There are few evidence-based interventions for symptom relief in this population. To stimulate innovation in symptom management, data on patient symptom prioritization and treatment preferences are needed. We undertook this study to (1) identify patient-prioritized symptoms for the development of symptom relief therapies and (2) elicit preferences for treatments among individuals receiving hemodialysis. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:We conducted a mixed methods study that included focus groups in Carrboro, North Carolina; Tucson, Arizona; and Seattle, Washington and a nationally distributed online survey. Focus group transcripts were analyzed for patterns, and the highest priority symptoms were determined on the basis of frequency and report severity. We used focus group findings to inform survey items. Focus group and survey results were crossvalidated and synthesized for final symptom prioritization. RESULTS:There were 32 participants across three focus groups and 87 survey respondents from 27 states in the United States. The physical symptoms of insomnia, fatigue, muscle cramping, and nausea/vomiting and the mood symptoms of anxiety and depressed mood were reported by participants in all focus groups. Among survey respondents, fatigue (94%), cramping (79%), and body aches (76%) were the most common physical symptoms, and feeling depressed (66%), worried (64%), and frustrated (63%) were the most common mood symptoms. The top-prioritized symptoms were consistent across focus group and survey participants and included the physical symptoms insomnia, fatigue, and cramping and the mood symptoms anxiety, depression, and frustration. Participants indicated that symptom frequency, duration, unpredictability, and social and financial effects factored most heavily into symptom prioritization. CONCLUSIONS:Patients prioritized the physical symptoms of insomnia, fatigue, and cramping and the mood symptoms of anxiety, depression, and frustration as the top symptoms for which to find new therapies.

SUBMITTER: Flythe JE

PROVIDER: S-EPMC5969481 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Symptom Prioritization among Adults Receiving In-Center Hemodialysis: A Mixed Methods Study.

Flythe Jennifer E JE Hilliard Tandrea T Castillo Graciela G Ikeler Kourtney K Orazi Jazmine J Abdel-Rahman Emaad E Pai Amy Barton AB Rivara Matthew B MB St Peter Wendy L WL Weisbord Steven D SD Wilkie Caroline C Mehrotra Rajnish R

Clinical journal of the American Society of Nephrology : CJASN 20180320 5

<h4>Background and objectives</h4>Individuals receiving in-center hemodialysis experience a high symptom burden that detrimentally affects their quality of life. There are few evidence-based interventions for symptom relief in this population. To stimulate innovation in symptom management, data on patient symptom prioritization and treatment preferences are needed. We undertook this study to (<i>1</i>) identify patient-prioritized symptoms for the development of symptom relief therapies and (<i> ...[more]

PMID: 29559445

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Project description:Rationale & objectiveAttention to geriatric impairments is not routinely provided to older adults receiving dialysis. Our objective was to identify patient and personnel perspectives on experiences with geriatric problems, unmet needs that may affect a patient's ability to maintain his or her functional status, and preferences for design of a geriatric model of care tailored to address the unmet needs.Study designQualitative study using semi-structured interviews and focus groups.Setting & participants14 hemodialysis patients 55 years and older and 24 dialysis unit personnel (eg, nephrologists, nurses, patient care technicians, and social workers) representing 5 dialysis units.Analytical approachContent analysis to identify themes reflecting unmet needs and design considerations for a geriatric model of care for older adults receiving dialysis.Results4 themes (or unmet needs) identified from both patient and personnel transcripts were: (1) mobility, which referred to the insufficient mobility assessment and transportation services; (2) medications, which referred to insufficient attention to appropriate prescribing and medication self-management; (3) social support, which referred to insufficient support for activities of daily living and emotional problems; and (4) communication, which referred to insufficient patient-provider and interprofessional communication, including data transfer across separate health systems. Although participants generally acknowledged that an integrated model of care could result in benefits across all 4 areas of unmet need, they noted that the program design would need to minimize disruption of current workflow and practices in dialysis units.LimitationsThe findings may not be broadly representative of all older adults receiving dialysis and dialysis unit personnel.ConclusionsThere is insufficient attention to mobility, medication management, social support, and communication needs for older adults receiving in-center hemodialysis. Addressing these unmet needs in a geriatric model of care and measuring its effectiveness are areas of future research.

Project description:Rationale & objectiveMore than 50% of hemodialysis patients experience sleep disturbance and most have coexisting sleep apnea. However, how sleep apnea affects sleep and the overall experience of patients with chronic kidney disease treated by hemodialysis has not been evaluated.Study designA mixed-methods design, incorporating cross-sectional observational and descriptive qualitative methodologies.Setting & participantsPatients receiving maintenance hemodialysis in Newcastle, New South Wales, Australia, with newly diagnosed sleep apnea (apnea-hypopnea index ≥ 5 per hour).AssessmentsIn-laboratory polysomnography to assess sleep apnea and objective sleep parameters. Epworth Sleepiness Scale to assess daytime symptoms. A semi-structured qualitative interview to explore patient experience.Analytical approachDescriptive and iterative thematic analysis.ResultsWe analyzed 36 patients with newly diagnosed sleep apnea and interviewed 26 (mean age, 62 years, median apnea-hypopnea index, 32 per hour). Severity of sleep apnea did not affect patients' sleep duration, sleep efficiency, or self-reported Epworth Sleepiness Scale score. From the qualitative interviews, 4 themes emerged: "broken sleep" related to short sleep duration, with waking and dozing off a common sleep cycle, caused by uncontrolled pain and dialysis. Many participants reported regularly "feeling unrefreshed" on waking. "Impact of sleep disturbance" included reduced physical, mental, and self-management capacity. Finally, interviewees described the need to use strategies to "soldier on" with symptoms.LimitationsParticipants' views are only transferrable to hemodialysis patients with sleep apnea.ConclusionsOur findings suggest that severity of sleep apnea does not affect sleep time or patient-reported daytime sleepiness; however, hemodialysis patients with sleep apnea report disturbed and unrefreshed sleep and the debilitating effects of sleep disturbance is profound. Broken and unrefreshed sleep were the dominant symptoms of sleep apnea and should be assessed routinely to identify patients with sleep apnea and improve quality of life in patients with chronic kidney disease treated with hemodialysis.

Project description:BackgroundNon-adherence to medication is a common and complex issue faced by individuals undergoing hemodialysis (HD). However, more knowledge is needed about modifiable factors influence on non-adherence. This study investigated the prevalence of non-adherence, medication beliefs and symptom burden and severity among patients receiving HD in Denmark. Associations between non-adherence, medications beliefs and symptom burden and severity were also explored.MethodA cross-sectional questionnaire-based multisite study, including 385 participants. We involved patient research consultants in the study design process and the following instruments were included: Medication Adherence Report Scale, Beliefs about Medication Questionnaire and Dialysis Symptom Index. Logistic regression analysis was performed.ResultsThe prevalence of non-adherence was 32% (95% CI 27-37%) using a 23-point-cut-off. Just over one third reported being concerned about medication One third also believed physicians to overprescribe medication, which was associated with 18% increased odds of non-adherence. Symptom burden and severity were high, with the most common symptoms being tiredness/ lack of energy, itching, dry mouth, trouble sleeping and difficulties concentrating. A high symptom burden and/or symptom severity score was associated with an increased odd of non-adherence.ConclusionThe study found significant associations between non-adherence and, beliefs about overuse, symptom burden and symptom severity. Our results suggest health care professionals (HCP) should prioritize discussion about medication adherence with patients with focus on addressing patient-HCP relationship, and patients' symptom experience. Future research is recommended to explore the effects of systematically using validated adherence measures in clinical practice on medication adherence, patient-HCP communication and trust. Additionally, studies are warranted to further investigate the relationship between symptom experience and adherence in this population.Trial registrationNCT03897231.

Project description:BackgroundThe Symptom Assessment and Management (SAM) program is a structured, online, nurse-supported intervention to support symptom self-management in people receiving adjuvant chemotherapy post surgery for breast or colorectal cancer.ObjectiveThe objective of this study was to describe the development, implementation strategy, and evaluation of the SAM system.MethodsThe development of the SAM program involved 3 phases. In phase 1, the web app was developed through consultation with consumers and clinicians and of the literature to ensure that the system was evidence-based and reflected the realities of receiving treatment and supporting patients through treatment. In phase 2, 7 participants recorded the severity of 6 symptoms daily over the course of 1 cycle of chemotherapy. In phase 3, 17 participants recorded their symptoms daily over the course of 3 cycles of chemotherapy. Once symptoms were recorded, participants received immediate feedback on the severity of their symptoms and self-management recommendations, which could include seeking immediate medical attention. Data on quality of life, symptom burden, anxiety and depression, distress, and self-efficacy were collected during treatment; participants' perceptions of the SAM program were evaluated following participation via interview.ResultsThe outcomes of the SAM project include the development of a system that is reliable and easy to use and navigate. Participants reported benefits related to using the SAM program that included feeling more in control of managing their symptoms and feeling reassured. Engagement with the system on a daily basis was variable, with some participants completing the symptom tracker daily and others engaging some of the time. The feedback from all participants was that the system was easy to navigate and the information was relevant and supportive.ConclusionsThe SAM program has the potential to enhance the management of symptoms for people receiving chemotherapy treatment. The system creates an accurate repository of symptoms that can be accessed easily and highlight patterns in symptom experience. These can be shared with clinicians, with patient permission, to inform and support treatment plans. The potential to predict the risk of developing severe symptoms can be developed to anticipate the need for care and support. Further considerations on how to increase engagement with the system, the value of the system for people diagnosed with other tumor types and treatment regimes, and the incorporation of the system into everyday clinical practice are needed.

Project description:BackgroundPatients with postmenopausal nonmetastatic estrogen receptor-positive breast cancer often experience a reduced quality of life after primary treatment. The disease and treatment trajectory consists of surgery followed by chemotherapy or radiation therapy. Upon this, maintenance hormone therapy with an aromatase inhibitor can result in several physical and psychosocial symptoms. Optimal symptom control during maintenance therapy is central to maintaining the patient's quality of life.ObjectiveThis study aims to (1) develop an electronic symptom management tool for patients with postmenopausal early breast cancer receiving maintenance aromatase inhibitors with an endocrine aspect and (2) assess the feasibility, acceptability, and usability of the pilot version of the Bone@BC app. Furthermore, longitudinally, symptom prevalence and quality of life for patients with postmenopausal nonmetastatic estrogen receptor-positive breast cancer will be explored.MethodsThis study follows a multistage research plan. In stage 1, a systematic literature review to establish an overview of aromatase inhibitor-related symptoms reported by postmenopausal women with nonmetastatic estrogen receptor-positive breast cancer will be completed. In stage 2, a comprehensive overview of symptoms related to aromatase inhibitors (letrozole, exemestane, and anastrozole) will be performed (eg, by reviewing medical leaflets and guidelines). In stage 3, an electronic app with a user-friendly Patient Concern Inventory list to comprise symptoms and concerns will be developed. Last, in stage 4, a convergent mixed methods feasibility study of the pilot version of the Bone@BC app will be conducted. A total of 45 patients with postmenopausal nonmetastatic estrogen receptor-positive breast cancer will use the app daily for symptom identification and respond to 6 serial patient-reported outcome measurements for 12 weeks. Finally, semistructured interviews will be performed. The primary outcome includes consent rate, attrition rate, retention rates, technical issues, and adherence, assessed using preestablished criteria on feasibility and a mixed methods approach for exploring acceptability. A patient advisory board consisting of 5 women with breast cancer is recruited to include their perspectives and experiences in the planning, organization, implementation, and dissemination of the research throughout the project.ResultsAt the time of submitting this paper (January 2024), a total of 23 patients have been included in the stage 2 medical audit over the recruitment period of 3 months (November 2022 to February 2023), and 19 patients have been enrolled in stage 2, the semistructured patient interviews.ConclusionsThis protocol describes a study investigating the feasibility, acceptability, and usability of the symptom management tool Bone@BC developed for patients with breast cancer with an endocrine aspect.Trial registrationClinicalTrails.gov NCT05367830; https://clinicaltrials.gov/ct2/show/NCT05367830.International registered report identifier (irrid)DERR1-10.2196/49549.

Dataset Information

Symptom Prioritization among Adults Receiving In-Center Hemodialysis: A Mixed Methods Study.

Publications

Symptom Prioritization among Adults Receiving In-Center Hemodialysis: A Mixed Methods Study.

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