Patient Perspectives of Skeletal Muscle Cramping in Dialysis: A Focus Group Study.
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ABSTRACT:
SUBMITTER: Grandinetti A
PROVIDER: S-EPMC10371365 | biostudies-literature | 2023 Jun
REPOSITORIES: biostudies-literature
Publications
Patient Perspectives of Skeletal Muscle Cramping in Dialysis: A Focus Group Study.
Grandinetti Amanda A Hilliard-Boone Tandrea S TS Wilund Kenneth R KR Logan Dilani D St Peter Wendy L WL Wingard Rebecca R Tentori Francesca F Keller San S West Melissa M Lacson Eduardo E Richardson Michelle M MM
Kidney360 20230408 6
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Project description:Skeletal muscle cramping is a common and bothersome symptom for patients on maintenance dialysis therapy, regardless of modality, and it has not been prioritized for innovative assessments or treatments. Research to prevent or treat skeletal muscle cramping in patients receiving dialysis is hindered by poorly understood pathophysiology, lack of an accepted definition, and the absence of a standardized measurement method. The Kidney Health Initiative, a public-private partnership between the American Society of Nephrology and US Food and Drug Administration, convened a multidisciplinary workgroup to define a set of patient-reported outcome measures for use in clinical trials to test the effect of new dialysis devices, new KRTs, lifestyle/behavioral modifications, and medications on skeletal muscle cramping. Upon determining that foundational work was necessary, the workgroup undertook a multistep process to elicit concepts central to developing the basis for demonstrating content validity of candidate patient-reported outcome measures for skeletal muscle cramping in patients on dialysis. The workgroup sought to (1) create an accepted, patient-endorsed definition for skeletal muscle cramping that applies to all dialysis modalities, (2) construct a conceptual model for developing and evaluating a skeletal muscle cramping-specific patient-reported outcome measure, and (3) identify potential questions from existing patient-reported outcome measures that could be modified or adapted and subsequently tested in the dialysis population. We report the results of the workgroup's efforts, provide our recommendations, and issue a call to action to address the gaps in knowledge and research needs we identified. These action steps are urgently needed to quantify skeletal muscle cramping burden, assess the effect, and measure meaningful changes of new interventions to improve the experience of patients receiving dialysis and suffering from skeletal muscle cramping.
| S-EPMC9528264 | biostudies-literature
Project description:BACKGROUND: Patient registries represent a well-established methodology for prospective data collection with a wide array of applications for clinical research and health care administration. An examination and synthesis of registry stakeholder perspectives has not been previously reported in the literature. METHODS: To inform the development of future neurological registries we examined stakeholder perspectives about such registries through a literature review followed by 3 focus groups comprised of a total of 15 neurological patients and 12 caregivers. RESULTS: (1) LITERATURE REVIEW: We identified 6,435 abstracts after duplicates were removed. Of these, 410 articles underwent full text review with 24 deemed relevant to perspectives about neurological and non-neurological registries and were included in the final synthesis. From a patient perspective the literature supports altruism, responsible use of data and advancement of research, among others, as motivating factors for participating in a patient registry. Barriers to participation included concerns about privacy and participant burden (i.e. extra clinic visits and associated costs). (2) Focus groups: The focus groups identified factors that would encourage participation such as: having a clear purpose; low participant burden; and being well-managed among others. CONCLUSIONS: We report the first examination and synthesis of stakeholder perspectives on registries broadly with a specific focus on neurological patient registries. The findings of the broad literature review were congruent with the neurological patient and caregiver focus groups. We report common themes across the literature and the focus groups performed. Stakeholder perspectives need to be considered when designing and operating patient registries. Emphasizing factors that promote participation and mitigating barriers may enhance patient recruitment.
| S-EPMC4225768 | biostudies-literature
Project description:BACKGROUND:Most prospective studies involving individuals receiving maintenance dialysis have been small, and many have had poor clinical translatability. Research relevance can be enhanced through stakeholder engagement. However, little is known about dialysis clinic stakeholders' perceptions of research participation and facilitation. The objective of this study was to characterize the perspectives of dialysis clinic stakeholders (patients, clinic personnel, and medical providers) on: (1) research participation by patients and (2) research facilitation by clinic personnel and medical providers. We also sought to elucidate stakeholder preferences for research communication. STUDY DESIGN:Qualitative study. SETTING & PARTICIPANTS:7 focus groups (59 participants: 8 clinic managers, 14 nurses/patient care technicians, 8 social workers/dietitians, 11 nephrologists/advanced practice providers, and 18 patients/care partners) from 7 North Carolina dialysis clinics. METHODOLOGY:Clinics and participants were purposively sampled. Focus groups were recorded and transcribed. ANALYTICAL APPROACH:Thematic analysis. RESULTS:We identified 11 themes that captured barriers to and facilitators of research participation by patients and research facilitation by clinic personnel and medical providers. We collapsed these themes into 4 categories to create an organizational framework for considering stakeholder (narrow research understanding, competing personal priorities, and low patient literacy and education levels), relationship (trust, buy-in, and altruistic motivations), research design (convenience, follow-up, and patient incentives), and dialysis clinic (professional demands, teamwork, and communication) aspects that may affect stakeholder interest in participating in or facilitating research. These themes appear to shape the degree of research readiness of a dialysis clinic environment. Participants preferred short research communications delivered in multiple formats. LIMITATIONS:Potential selection bias and inclusion of English-speaking participants only. CONCLUSIONS:Our findings revealed patient interest in participating in research and clinical personnel and medical provider interest in facilitating research. Overall, our results suggest that dialysis clinic research readiness may be enhanced through increased stakeholder research knowledge and alignment of clinical and research activities.
| S-EPMC6421569 | biostudies-literature
Project description:BackgroundAcross the world, healthcare systems have become increasingly complex, making it more difficult for nurses to act ethically when faced with moral dilemmas. The COVID-19 pandemic in particular revealed ethical challenges, highlighting the need for nurses to attain high levels of moral competence. Nurses who attain moral competency provide superior patient care because they have integrated clinical competence with sensitivity to moral values. Understanding what comprises moral competence in nursing is crucial to stimulate and support consistent ethical behaviour. However, most studies to date on moral competence in nursing have been conducted at a national level and only from a particular stakeholders' perspective, thereby limiting their utility.ObjectiveTo explore and document the characteristics of the morally competent nurse from the perspectives of nurses and patient representatives practicing in Europe.DesignA descriptive qualitative study was conducted.MethodsSemi-structured focus group discussions were conducted to collect data. Data were analysed with a descriptive thematic method.ParticipantsA purposive sample of 38 nurses and 35 patient representatives was recruited. They were geographically spread across six European countries.ResultsThe overarching characteristic of a morally competent nurse that emerged from our thematic analyses of group discussions is that they are person-centred. This person-centred quality is expressed on intrapersonal and interpersonal levels. The theme 'main components of moral competence in nurses' can be divided into three subthemes: knowledge, skills, and attitudes.ConclusionsThis study provided a deeper understanding of moral competency in nurses, from both the perspective of nurses and patient representatives in Europe. Morally competent nurses are person-centred and possess the requisite knowledge, skills, and attitudes that foster positive relationships with patients and their families, as well as with their nursing colleagues. Pedagogically, the results should be useful for teaching how moral competence can be supported in practice and how nurses can be better prepared to deal with ethically sensitive care practices in constantly evolving healthcare systems.
| S-EPMC11840217 | biostudies-literature
Project description:BackgroundAlthough several self-injectable preventive treatments for migraine have become available, they are not yet widely used. Thus, understanding patients' perceptions towards them is limited.ObjectiveThis study aimed to inform the design of a preference-elicitation instrument, which is being developed to quantify preventive treatment preferences of people with migraine.MethodsWe conducted a qualitative study involving nine in-person focus groups (three per country) in the United States, the United Kingdom, and Germany. Participants were adults (n = 47) with episodic or chronic migraine who were currently using or had used a prescription preventive treatment for migraine within the previous 5 years. During the focus groups, participants described their experiences of migraine and preventive treatments; handled and simulated self-injection using five different unbranded, fired demonstration auto-injectors and prefilled syringes; and ranked different aspects of preventive treatments by importance. Focus groups were analyzed with a focus on themes that would be feasible or meaningful to include in a subsequent preference-elicitation instrument.ResultsReducing the frequency and severity of migraine attacks was consistently ranked as the most important aspect of preventive treatment. Participants expressed dissatisfaction with available daily oral preventive treatments for migraine they had previously used because they were ineffective or caused intolerable adverse events. Many participants were willing to self-inject a treatment that was effective and tolerable. When presented with devices for self-injecting a preventive treatment for migraine, participants generally preferred autoinjectors over prefilled syringes. Participants especially valued safety features such as the unlocking step and automated needle insertion, and audible and visual dose confirmation increased confidence in autoinjector use. Autoinjector needle protection mechanisms were also appreciated, especially by participants averse to needles, as the needles are not visible.ConclusionsThis study highlights the fact that many people with migraine still lack access to a preventive treatment that is effective and tolerable. In addition to efficacy and safety considerations, treatment decisions may be guided by the mode of administration. In the case of self-injectable preventive treatments, key device characteristics affecting these decisions may be ease of use, comfort, and confidence in self-injection. Insights gained from this study were used to help develop a preliminary set of attributes and levels for a preference-elicitation instrument.
| S-EPMC8739468 | biostudies-literature
Project description:The ABCDE bundle is a multifaceted, interprofessional intervention that is associated with reduced ventilator and delirium days as well as increased likelihood of mobility in intensive care.The aim of this study is to describe organizational domains that contribute to variation in ABCDE bundle implementation as reported by intensive care unit providers and to examine the capability of a conceptual framework for identifying variation in ABCDE bundle implementation.We conducted 2 separate focus groups that included nurses, respiratory therapists, occupational and physical therapists (N = 16) from the surgical and medical intensive care units at 1 academic medical center. All participants had experience performing ABCDE bundle activities.Variation in how the ABCDE bundle was interpreted and executed within and across disciplines was noted. Organizational facets, the physical environment, labor quantity and quality, task burden, provider attitudes, and patient characteristics were noted to influence ABCDE bundle execution. The difficulty coordinating and implementing early mobility was emphasized.The number of disciplines required to perform an activity and individual component complexity was reported to influence ABCDE bundle implementation. Nurses repeatedly described challenges with coordinating care across disciplines. Small tests of change, adequate staffing, interprofessional training and protocol development efforts, and role modeling may be effective methods for successful ABCDE bundle implementation.
| S-EPMC5089165 | biostudies-literature
Project description:ObjectiveFactors that physicians and patients consider when making decisions about using or recommending health apps are not well understood. We explored these factors to better assess how to support such decision making.MethodsWe conducted an exploratory cross-sectional study in Ontario using qualitative focus groups and quantitative surveys. 133 physicians and 94 community dwelling adults completed online surveys and we held two focus groups of nine community dwelling participants who had cardiovascular risk factors and an interest in using mHealth apps. Quantitative survey data was analyzed descriptively. Focus groups were audio-recorded and transcribed verbatim prior to inductive thematic content analysis. We integrated the results from the surveys and focus groups to understand factors that influence physicians' and patients' selection and use of such apps.ResultsPhysicians recommend apps to patients but the level of evidence they prefer to use to guide selection did not align with what they were currently using. Patients trusted recommendations and reviews from medical organizations and healthcare professionals when selecting apps and were motivated to continue using apps when they supported goal setting and tracking, data sharing, decision making, and empowerment.ConclusionsThe findings highlight the significance of evaluating mHealth apps based on metrics that patients and physicians value beyond usage and clinical outcome data. Patients engage with apps that support them in confidently managing their health. Increased training and awareness of apps and creating a more rigorous evidence base showing the value of apps to supporting health goals will support greater adoption and acceptance of mHealth apps.
| S-EPMC9136450 | biostudies-literature
Project description:BackgroundThe adoption of smart technologies for patient care is greatly increasing. IoT-based smart mattresses offer features such as automatic body repositioning for pressure ulcer prevention, weight measurement, vital sign tracking, and rapid response to emergencies. This study explores nurses' perspectives on the adoption of smart technologies, with a particular focus on smart mattresses in hospitals.MethodsFocus group interviews were conducted with 17 nurses from intensive care parts, general wards, and COVID-19 designated wards in a tertiary university hospital in South Korea. Data were collected through online meetings and analyzed using thematic analysis.ResultsThematic analysis revealed six major themes and 14 subthemes under three categories. Patient-related perspectives included themes of 'difficulties in meeting patients' care needs' and 'identified areas for technology adoption based on patient care experiences.' Nursing-related perspectives encompassed 'potentials of smart technology for nursing care' and 'increased time and workload due to new device usage.' Technology-related perspectives included 'previous experience with technology devices' and 'expectations for in-development devices.'ConclusionsNurses generally expressed receptiveness to smart technologies including smart mattresses, recognizing their potential to enhance patient care and nursing efficiency. Perspectives varied by department, highlighting the need for tailored solutions. Prior experiences, both positive and negative, offered important insights for designing devices that are more compatible with clinical practice. Incorporating nurses' feedback and addressing educational needs are critical for successful adoption.
| S-EPMC11917002 | biostudies-literature
Project description:BackgroundDementia misconceptions on social media are common, with negative effects on people with the condition, their carers, and those who know them. This study codeveloped a thematic framework with carers to understand the forms these misconceptions take on Twitter.ObjectiveThe aim of this study is to identify and analyze types of dementia conversations on Twitter using participatory methods.MethodsA total of 3 focus groups with dementia carers were held to develop a framework of dementia misconceptions based on their experiences. Dementia-related tweets were collected from Twitter's official application programming interface using neutral and negative search terms defined by the literature and by carers (N=48,211). A sample of these tweets was selected with equal numbers of neutral and negative words (n=1497), which was validated in individual ratings by carers. We then used the framework to analyze, in detail, a sample of carer-rated negative tweets (n=863).ResultsA total of 25.94% (12,507/48,211) of our tweet corpus contained negative search terms about dementia. The carers' framework had 3 negative and 3 neutral categories. Our thematic analysis of carer-rated negative tweets found 9 themes, including the use of weaponizing language to insult politicians (469/863, 54.3%), using dehumanizing or outdated words or statements about members of the public (n=143, 16.6%), unfounded claims about the cures or causes of dementia (n=11, 1.3%), or providing armchair diagnoses of dementia (n=21, 2.4%).ConclusionsThis is the first study to use participatory methods to develop a framework that identifies dementia misconceptions on Twitter. We show that misconceptions and stigmatizing language are not rare. They manifest through minimizing and underestimating language. Web-based campaigns aiming to reduce discrimination and stigma about dementia could target those who use negative vocabulary and reduce the misconceptions that are being propagated, thus improving general awareness.
| S-EPMC8822432 | biostudies-literature
Project description:This work sought to identify characteristics differing between those with and without muscle cramping during a 161-km ultramarathon.In this observational study, race participants underwent body weight measurements before, during, and after the race; completed a post-race questionnaire about muscle cramping and "near" cramping (controllable, not reaching full-blown cramping), drinking strategies, and use of sodium supplementation during four race segments; and underwent a post-race blood draw for determination of serum sodium and blood creatine kinase (CK) concentrations.The post-race questionnaire was completed by 280 (74.5 %) of the 376 starters. A post-race blood sample was provided by 181 (61.1 %) of the 296 finishers, and 157 (53.0 %) of finishers completed the post-race survey and also provided a post-race blood sample. Among those who completed the survey, the prevalence of cramping and near cramping was 14.3 and 26.8 %, respectively, with greatest involvement being in the calf (54 %), quadriceps (44 %), and hamstring (33 %) muscles. Those with cramping or near cramping were more likely to have a prior history of muscle cramping during an ultramarathon (p?<?0.0001) and had higher blood CK concentrations (p?=?0.001) than those without cramping. Weight change during the race, use of sodium supplements, intake rate of sodium in supplements, and post-race serum sodium concentration did not differ between those with and without cramping.Muscle cramping is most common in those with a prior history of cramping and greater muscle damage during an ultramarathon, suggesting an association with relative muscular demand. Impaired fluid and sodium balance did not appear to be an etiology of muscle cramping during an ultramarathon.
| S-EPMC4532703 | biostudies-literature