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1.
Am J Med Genet A ; 194(6): e63543, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38318960

RESUMEN

The neurofibromatoses (NFs) are a set of incurable genetic disorders that predispose individuals to nervous system tumors. Although many patients experience anxiety and depression, there is little research on psychosocial interventions in this population. The present study examined the effects of a mind-body intervention on depression and anxiety in adults with NF. This is a secondary analysis of the Relaxation Response Resiliency Program for NF (3RP-NF), an 8-week virtual group intervention that teaches mind-body skills (e.g., relaxation, mindfulness) to improve quality of life. Participants were randomized to 3RP-NF or the Health Enhancement Program for NF (HEP-NF) consisting of health informational sessions and discussion. We evaluated depression (PHQ-9) and anxiety (GAD-7) at posttreatment, 6 months, and 12 months. Both groups improved in depression and anxiety between baseline and posttest, 6 months, and 12 months. The 3RP-NF group showed greater improvements in depression scores from baseline to 6 months compared with HEP-NF and with lower rates of clinically significant depressive symptoms. There were no between-group differences for anxiety. Both interventions reduced distress and anxiety symptoms for individuals with NF. The 3RP-NF group may be better at sustaining these improvements. Given the rare nature of NF, group connection may facilitate reduced distress.


Asunto(s)
Ansiedad , Depresión , Terapias Mente-Cuerpo , Neurofibromatosis , Calidad de Vida , Humanos , Femenino , Masculino , Depresión/terapia , Depresión/psicología , Adulto , Ansiedad/terapia , Neurofibromatosis/psicología , Neurofibromatosis/terapia , Terapias Mente-Cuerpo/métodos , Persona de Mediana Edad , Atención Plena/métodos
2.
J Neurooncol ; 167(2): 315-322, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38409461

RESUMEN

PURPOSE: Neurofibromatosis (NF) is associated with low quality-of-life (QoL). Learning disabilities are prevalent among those with NF, further worsening QoL and potentially impacting benefits from mind-body and educational interventions, yet research on this population is scarce. Here, we address this gap by comparing NF patients with and without learning disabilities on QoL at baseline and QoL-related gains following two interventions. METHODS: Secondary analysis of a fully-powered RCT of a mind-body program (Relaxation Response Resiliency Program for NF; 3RP-NF) versus an educational program (Health Enhancement Program for NF; HEP-NF) among 228 adults with NF. Participants reported QoL in four domains (Physical Health, Psychological, Social Relationships, and Environmental). We compare data at baseline, post-treatment, and 12-month follow-up, controlling for intervention type. RESULTS: At baseline, individuals with NF and learning disabilities had lower Psychological (T = -3.0, p = .001) and Environmental (T = -3.8, p < .001) QoL compared to those without learning disabilities. Both programs significantly improved all QoL domains (ps < .0001-0.002) from baseline to post-treatment, regardless of learning disability status. However, those with learning disabilities exceeded the minimal clinically important difference in only one domain (Psychological QoL) compared to three domains in individuals without learning disabilities. Moreover, those with learning disabilities failed to sustain statistically significant gains in Psychological QoL at 12-months, while those without learning disabilities sustained all gains. CONCLUSION: Adults with NF and learning disabilities have lower Psychological and Environmental QoL. While interventions show promise in improving QoL regardless of learning disabilities, additional measures may bolster clinical benefit and sustainability among those with learning disabilities.


Asunto(s)
Discapacidades para el Aprendizaje , Neurofibromatosis , Adulto , Humanos , Calidad de Vida , Neurofibromatosis/psicología , Terapia por Relajación , Discapacidades para el Aprendizaje/etiología , Discapacidades para el Aprendizaje/terapia , Educación en Salud
3.
Qual Life Res ; 33(5): 1233-1240, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38214851

RESUMEN

PURPOSE: This study aimed to estimate minimal clinically important difference (MCID) values for the World Health Organization Quality of Life Brief version (WHOQOL-BREF) among adults with neurofibromatosis (NF). An MCID is needed to demonstrate clinical meaningfulness of interventions for NF. METHODS: We estimated MCID for the WHOQOL-BREF: the quality of life (QoL) measure recommended by the Response Evaluation in Neurofibromatosis and Schwannomatosis International Collaboration. We used data from 228 clinical trial participants with NF type 1, NF type 2-related schwannomatosis, or schwannomatosis (SCHWN) who completed 10 weeks of a virtual group mind-body program targeting resiliency or a time- and attention-matched control. Following established guidelines, we estimated MCIDs using both anchor-based and distribution-based methods for physical, psychological, social relationships, and environmental domains of the WHOQOL-BREF. RESULTS: MCID results varied across method and QoL domain. Three anchor-based methods, average change (AC), change difference (CD), and regression (REG), yielded the most consistent and comparable MCID across QoL domains. Based on these methods, we recommend ranges for each QoL domain: Physical QoL (3.9-7.3), Psychological QoL (4.7-8.1), Social QoL (2.6-5.9), and Environmental QoL (4.1-6.6). CONCLUSION: Establishing a rigorous MCID for QoL in NF is a critical step toward evaluating meaningful change in response to psychosocial interventions.


Asunto(s)
Diferencia Mínima Clínicamente Importante , Neurilemoma , Neurofibromatosis , Calidad de Vida , Neoplasias Cutáneas , Organización Mundial de la Salud , Humanos , Neurofibromatosis/psicología , Calidad de Vida/psicología , Femenino , Masculino , Adulto , Persona de Mediana Edad , Encuestas y Cuestionarios , Psicometría , Adulto Joven
4.
Clin Trials ; 21(1): 73-84, 2024 02.
Artículo en Inglés | MEDLINE | ID: mdl-37962219

RESUMEN

BACKGROUND/AIMS: Individuals with neurofibromatosis, including neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2)-related schwannomatosis (SWN), and other forms of SWN, often experience disease manifestations and mental health difficulties for which psychosocial interventions may help. An anonymous online survey of adults with neurofibromatosis assessed their physical, social, and emotional well-being and preferences about psychosocial interventions to inform clinical trial design. METHODS: Neurofibromatosis clinical researchers and patient representatives from the Response Evaluation in Neurofibromatosis and Schwannomatosis International Collaboration developed the survey. Eligibility criteria included age ≥ 18 years, self-reported diagnosis of NF1, NF2, or SWN, and ability to read and understand English. The online survey was distributed internationally by the Neurofibromatosis Registry and other neurofibromatosis foundations from June to August 2020. RESULTS: Surveys were completed by 630 adults (18-81 years of age; M = 45.5) with NF1 (78%), NF2 (14%), and SWN (8%) who were mostly White, not Hispanic/Latino, female, and from the United States. The majority (91%) reported that their neurofibromatosis symptoms had at least some impact on daily life. In the total sample, 51% endorsed a mental health diagnosis, and 27% without a diagnosis believed they had an undiagnosed mental health condition. Participants indicated that neurofibromatosis affected their emotional (44%), physical (38%), and social (35%) functioning to a high degree. Few reported ever having participated in a drug (6%) or psychosocial (7%) clinical trial, yet 68% reported they "probably" or "definitely" would want to participate in a psychosocial trial if it targeted a relevant concern. Top treatment targets were anxiety, healthier lifestyle, and daily stress. Top barriers to participating in psychosocial trials were distance to clinic, costs, and time commitment. Respondents preferred interventions delivered by clinicians via individual sessions or a combination of group and individual sessions, with limited in-person and mostly remote participation. There were no significant group differences by neurofibromatosis type in willingness to participate in psychosocial trials (p = 0.27). Regarding interest in intervention targets, adults with SWN were more likely to prefer psychosocial trials for pain support compared to those with NF1 (p < 0.001) and NF2 (p < 0.001). CONCLUSION: This study conducted the largest survey assessing physical symptoms, mental health needs, and preferences for psychosocial trials in adults with neurofibromatosis. Results indicate a high prevalence of disease manifestations, psychosocial difficulties, and untreated mental health problems in adults with neurofibromatosis and a high degree of willingness to participate in psychosocial clinical trials. Patient preferences should be considered when designing and implementing psychosocial interventions to develop the most feasible and meaningful studies.


Asunto(s)
Neurilemoma , Neurofibromatosis , Neurofibromatosis 1 , Neurofibromatosis 2 , Neoplasias Cutáneas , Adulto , Femenino , Humanos , Estados Unidos , Adolescente , Neurofibromatosis/terapia , Neurofibromatosis/diagnóstico , Neurofibromatosis/psicología , Neurilemoma/diagnóstico , Neurilemoma/psicología , Neurilemoma/terapia , Neoplasias Cutáneas/diagnóstico , Neoplasias Cutáneas/psicología , Neoplasias Cutáneas/terapia , Neurofibromatosis 2/diagnóstico , Neurofibromatosis 2/psicología , Neurofibromatosis 2/terapia , Neurofibromatosis 1/diagnóstico , Neurofibromatosis 1/psicología , Neurofibromatosis 1/terapia , Encuestas y Cuestionarios
5.
Artículo en Inglés | MEDLINE | ID: mdl-38369228

RESUMEN

OBJECTIVE: To assess psychosocial treatment preferences and factors that may affect treatment participation among young adults with a recent concussion and co-occurring anxiety. DESIGN: In-depth, semi-structured individual qualitative interviews, followed by thematic analysis using a hybrid deductive-inductive approach. SETTING: Academic medical center in the US Northeast. PARTICIPANTS: Seventeen young adults (18-24y) who sustained a concussion within the past 3-10 weeks and reported at least mild anxiety (≥5 on the Generalized Anxiety Disorder-7 questionnaire). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Primary outcomes include preferences for program content (eg, topics and skills), delivery modality, format, and barriers and facilitators to participation. RESULTS: We identified 4 domains characterizing participants' perceptions of and preferences for treatment. (1) Program content: Participants preferred a program early after injury that included psychoeducation and coping skills (eg, activity pacing, deep breathing, mindfulness). (2) Therapeutic processes: Participants preferred a person-centered approach in which clinicians normalized anxiety postconcussion and reassured them of recovery. (3) Program logistics: Participants endorsed that a brief, virtual program would be acceptable. They preferred access to program components through multiple modalities (eg, audio, video) and accommodations to manage concussion symptoms. (4) Barriers and facilitators to participation: Barriers included acute concussion symptoms (eg, screen sensitivity), time constraints, and forgetting sessions. Facilitators included a program that is flexible (format, scheduling), personalized (self-chosen mode for reminders, measure of accountability), and accessible (ie, advertising through health care professionals or social media). CONCLUSIONS: Participants need psychosocial support that normalizes their experiences and provides education and coping tools. Treatments should be accessible, flexible, and person centered. Psychosocial treatments meeting these preferences may help optimize the recovery of young adults with recent concussion and anxiety.

6.
J Behav Med ; 47(3): 537-543, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38383685

RESUMEN

Although chronic orofacial pain (COFP) is common among older adults, the role of psychological factors in pain outcomes among this population has received limited attention. This study examined the role of anxiety and pain catastrophizing, two corelates of pain in other populations, in pain intensity and interference among 166 older adults with COFP (79% female, Mage = 68.84, SD = 5.56). Participants completed an online survey including measures of anxiety, pain catastrophizing, and pain intensity/interference. We applied mediation analyses to test indirect associations between anxiety and pain outcomes via pain catastrophizing. Results indicated that anxiety was positively associated with pain intensity and pain interference (bs = .70-1.12, ps < .05). There was also an indirect association between anxiety and pain interference through pain catastrophizing (b = .35, 95% CI [.0383, .7954]), indicating pain catastrophizing partially accounts for this relationship. Assessing and addressing anxiety and pain catastrophizing has the potential to improve treatment outcomes in this population.


Asunto(s)
Dolor Crónico , Humanos , Femenino , Anciano , Masculino , Dolor Crónico/psicología , Ansiedad/epidemiología , Catastrofización/psicología , Dolor Facial , Trastornos de Ansiedad
7.
Int J Behav Med ; 31(1): 97-108, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-36754950

RESUMEN

BACKGROUND: Admission to a neurological intensive care unit (Neuro-ICU) can increase risk for depressive and anxiety symptoms for both patients and caregivers. To better understand the long-term mental health impact of a Neuro-ICU admission, we examined the dyadic interdependence between depression and anxiety at Neuro-ICU admission with 3-month quality of life (QoL) for patients and caregivers in a longitudinal, observational cohort study. METHOD: We assessed depressive and anxiety symptoms (Hospital Anxiety and Depression Scale; HADS) reported by neurologically intact patients (n = 72) and their caregivers (n = 72) within 2 weeks of Neuro-ICU admission (baseline) and 3-months post-discharge (follow-up). We examined the longitudinal association between dyadic depression and anxiety at Neuro-ICU admission and 3-month QoL (World Health Organization; QOL-BREF) across four domains (Physical, Psychological, Social relationships, and Environmental QoL) in separate actor-partner interdependence models (APIM) for patients and caregivers. RESULTS: In the overall models, patients' own baseline depression levels were negatively associated with their own 3-month QoL in all domains (ß = - 0.53 to - 0.64, p < 0.001), and for caregivers, only in the psychological (ß = - 0.73, p < .001) and social relationships (ß = - 0.56, p < .001) domains. No actor effects were found for one's own baseline anxiety impacting one's own 3-month QoL. Partner effects for one's own depression were significant for caregivers on patients' 3-month psychological (ß = - 0.26, p < .02) and environmental (ß = - 0.29, p < .03) QoL, as well as for patients on caregiver's 3-month psychological QoL (ß = 0.25, p < .02). No partner effects were significant in association with baseline anxiety and 3-month QoL in both patients and caregivers. CONCLUSION: Neuro-ICU patients' and caregivers' baseline depression has significant negative impacts on their own long-term QoL. Caregivers demonstrate significant negative impacts on patient long-term QoL in domains related to emotional distress and caregiver burden. Early identification of mental health symptoms, especially depression, during Neuro-ICU admission may provide an intervention opportunity to improve QoL post-discharge for both dyad members.


Asunto(s)
Cuidadores , Depresión , Humanos , Depresión/psicología , Cuidadores/psicología , Calidad de Vida/psicología , Estudios Prospectivos , Cuidados Posteriores , Alta del Paciente , Unidades de Cuidados Intensivos
8.
Artículo en Inglés | MEDLINE | ID: mdl-38899924

RESUMEN

BACKGROUND: Approximately 20% to 50% of patients develop persistent pain after traumatic orthopaedic injuries. Psychosocial factors are an important predictor of persistent pain; however, there are no evidence-based, mind-body interventions to prevent persistent pain for this patient population. QUESTIONS/PURPOSES: (1) Does the Toolkit for Optimal Recovery after Injury (TOR) achieve a priori feasibility benchmarks in a multisite randomized control trial (RCT)? (2) Does TOR demonstrate a preliminary effect in improving pain, as well as physical and emotional function? METHODS: This pilot RCT of TOR versus a minimally enhanced usual care comparison group (MEUC) was conducted among 195 adults with an acute orthopaedic traumatic injury at risk for persistent pain at four geographically diverse Level 1 trauma centers between October 2021 to August 2023. Fifty percent (97 of 195) of participants were randomized to TOR (mean age 43 ± 17 years; 67% [65 of 97] women) and 50% (98) to MEUC (mean age 45 ± 16 years; 67% [66 of 98] women). In TOR, 24% (23 of 97) of patients were lost to follow-up, whereas in the MEUC, 17% (17 of 98) were lost. At 4 weeks, 78% (76 of 97) of patients in TOR and 95% (93 of 98) in the MEUC completed the assessments; by 12 weeks, 76% (74 of 97) of patients in TOR and 83% (81 of 98) in the MEUC completed the assessments (all participants were still included in the analysis consistent with an intention-to-treat approach). The TOR has four weekly video-administered sessions that teach pain coping skills. The MEUC is an educational pamphlet. Both were delivered in addition to usual care. Primary outcomes were feasibility of recruitment (the percentage of patients who met study criteria and enrolled) and data collection, appropriateness of treatment (the percent of participants in TOR who score above the midpoint on the Credibility and Expectancy Scale), acceptability (the percentage of patients in TOR who attend at least three of four sessions), and treatment satisfaction (the percent of participants in TOR who score above the midpoint on the Client Satisfaction Scale). Secondary outcomes included additional feasibility (including collecting data on narcotics and rescue medications and adverse events), fidelity (whether the intervention was delivered as planned) and acceptability metrics (patients and staff), pain (numeric rating scale), physical function (Short Musculoskeletal Function Assessment questionnaire [SMFA], PROMIS), emotional function (PTSD [PTSD Checklist], depression [Center for Epidemiologic Study of Depression]), and intervention targets (pain catastrophizing, pain anxiety, coping, and mindfulness). Assessments occurred at baseline, 4 and 12 weeks. RESULTS: Several outcomes exceeded a priori benchmarks: feasibility of recruitment (89% [210 of 235] of eligible participants consented), appropriateness (TOR: 73% [66 of 90] scored > midpoint on the Credibility and Expectancy Scale), data collection (79% [154 of 195] completed all surveys), satisfaction (TOR: 99% [75 of 76] > midpoint on the Client Satisfaction Scale), and acceptability (TOR: 73% [71 of 97] attended all four sessions). Participation in TOR, compared with the MEUC, was associated with improvement from baseline to postintervention and from baseline to follow-up in physical function (SMFA, baseline to post: -7 [95% CI -11 to -4]; p < 0.001; baseline to follow-up: -6 [95% CI -11 to -1]; p = 0.02), PROMIS (PROMIS-PF, baseline to follow-up: 2 [95% CI 0 to 4]; p = 0.045), pain at rest (baseline to post: -1.2 [95% CI -1.7 to -0.6]; p < 0.001; baseline to follow-up: -1 [95% CI -1.7 to -0.3]; p = 0.003), activity (baseline to post: -0.7 [95% CI -1.3 to -0.1]; p = 0.03; baseline to follow-up: -0.8 [95% CI -1.6 to -0.1]; p = 0.04), depressive symptoms (baseline to post: -6 [95% CI -9 to -3]; p < 0.001; baseline to follow-up: -5 [95% CI -9 to -2]; p < 0.002), and posttraumatic symptoms (baseline to post: -4 [95% CI -7 to 0]; p = 0.03; baseline to follow-up: -5 [95% CI -9 to -1]; p = 0.01). Improvements were generally clinically important and sustained or continued through the 3 months of follow-up (that is, above the minimum clinically important different [MCID] of 7 for the SMFA, the MCID of 3.6 for PROMIS, the MCID of 2 for pain at rest and pain during activity, the MCID of more than 10% change in depressive symptoms, and the MCID of 10 for posttraumatic symptoms). There were treatment-dependent improvements in pain catastrophizing, pain anxiety, coping, and mindfulness. CONCLUSION: TOR was feasible and potentially efficacious in preventing persistent pain among patients with an acute orthopaedic traumatic injury. Using TOR in clinical practice may prevent persistent pain after orthopaedic traumatic injury. LEVEL OF EVIDENCE: Level I, therapeutic study.

9.
Neurocrit Care ; 40(2): 674-688, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37523110

RESUMEN

BACKGROUND: Family caregivers of patients with severe acute brain injury (SABI) admitted to intensive care units (ICUs) with coma experience heightened emotional distress stemming from simultaneous stressors. Stress and coping frameworks can inform psychosocial intervention development by elucidating common challenges and ways of navigating such experiences but have yet to be employed with this population. The present study therefore sought to use a stress and coping framework to characterize the stressors and coping behaviors of family caregivers of patients with SABI hospitalized in ICUs and recovering after coma. METHODS: Our qualitative study recruited a convenience sample from 14 US neuroscience ICUs. Participants were family caregivers of patients who were admitted with ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, traumatic brain injury, or hypoxic-ischemic encephalopathy; had experienced a comatose state for > 24 h; and completed or were scheduled for tracheostomy and/or gastrostomy tube placement. Participants were recruited < 7 days after transfer out of the neuroscience ICU. We conducted live online video interviews from May 2021 to January 2022. One semistructured interview per participant was recorded and subsequently transcribed. Recruitment was stopped when thematic saturation was reached. We deductively derived two domains using a stress and coping framework to guide thematic analysis. Within each domain, we inductively derived themes to comprehensively characterize caregivers' experiences. RESULTS: We interviewed 30 caregivers. We identified 18 themes within the two theory-driven domains, including ten themes describing practical, social, and emotional stressors experienced by caregivers and eight themes describing the psychological and behavioral coping strategies that caregivers attempted to enact. Nearly all caregivers described using avoidance or distraction as an initial coping strategy to manage overwhelming emotions. Caregivers also expressed awareness of more adaptive strategies (e.g., cultivation of positive emotions, acceptance, self-education, and soliciting social and medical support) but had challenges employing them because of their heightened emotional distress. CONCLUSIONS: In response to substantial stressors, family caregivers of patients with SABI attempted to enact various psychological and behavioral coping strategies. They described avoidance and distraction as less helpful than other coping strategies but had difficulty engaging in alternative strategies because of their emotional distress. These findings can directly inform the development of additional resources to mitigate the long-term impact of acute psychological distress among this caregiver population.


Asunto(s)
Cuidadores , Habilidades de Afrontamiento , Humanos , Cuidadores/psicología , Coma , Adaptación Psicológica , Unidades de Cuidados Intensivos
10.
Aging Ment Health ; : 1-9, 2024 May 25.
Artículo en Inglés | MEDLINE | ID: mdl-38795364

RESUMEN

OBJECTIVES: We examined the extent to which positive affect expression in play interactions between adult children and their parents living with cognitive impairment was associated with lower depressive symptoms and mental health difficulties for both dyad members. Gender differences in positive affect expression were also examined. METHOD: Dyads (N = 126) self-reported their depressive symptoms and mental health difficulties. Dyad members later engaged in a video-recorded play interaction together, and their positive affect expression was observationally coded by trained coders in terms of 'enjoyment', 'laughter', and 'positive affect towards partner'. RESULTS: Findings from mixed models using the Actor Partner Interdependence Model showed that one's partner's positive affect was associated with one's own lower depressive symptoms. There were no significant actor effects or effects of role (parent vs. child). Results also revealed that women expressed more positive affect and had greater mental health difficulties, but not depressive symptoms. We found that one's partner's positive affect expressions were more associated with women's mental health than men's mental health. CONCLUSION: Positive affect expression may be a useful indicator of psychological health in parent-child relationships in which the parent has cognitive impairment. Positive affect may be useful to target in supportive, dyadic, psychosocial interventions.

11.
Psychol Health Med ; 29(1): 22-38, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-36878877

RESUMEN

We examined gender differences between resiliency factors (i.e. mindfulness, self-efficacy, coping, intimate care, and caregiver preparedness) and posttraumatic stress symptoms (PTSS) in informal caregivers of patients in the neuroscience intensive care unit (Neuro-ICU). Ninety-two informal caregivers were enrolled during patients' hospitalization and completed resiliency measures at baseline, and a PTSS measure at baseline, 3 and 6 months. We conducted five ANCOVAs to explore gender and resiliency on PTSS. No significant main effects of gender on PTSS were observed across time points. However, main effects were seen for resiliency on PTSS at baseline for informal caregivers with high (vs. low) mindfulness, coping, and self-efficacy. Gender moderated the association between mindfulness and PTSS (i.e. high mindfulness at baseline was associated with lower PTSS in males compared to females at 3 months) and intimate care and PTSS (high intimate care at baseline was associated with lower PTSS in males than females at 6 months; high intimate care at baseline for females was associated with lower PTSS at 6 months than females with low intimate care). Overall, we observed associations among informal caregivers' gender, resiliency, and PTSS, with males particularly benefitting from mindfulness and intimate care. These findings hold value for future inquiry into gender differences in this population with possible clinical implications.


Asunto(s)
Problema de Conducta , Resiliencia Psicológica , Trastornos por Estrés Postraumático , Masculino , Femenino , Humanos , Cuidadores , Trastornos por Estrés Postraumático/epidemiología , Trastornos por Estrés Postraumático/diagnóstico , Unidades de Cuidados Intensivos
12.
J Clin Psychol ; 80(2): 456-470, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38009710

RESUMEN

INTRODUCTION: Neurofibromatosis (NF) is chronic neurogenetic condition that increases risk for poor quality of life, depression, and anxiety. Given the lack of biomedical treatments, we developed the "Relaxation Response Resiliency for NF" (3RP-NF) program to improve psychosocial outcomes among adults with NF. OBJECTIVE: To move toward effectiveness testing, we must understand mechanisms that explained treatment effects. We tested whether our hypothesized mechanisms of change-mindfulness, coping, and optimism-mediated improvements in quality of life, depression, and anxiety among adults in the 3RP-NF program (N = 114; ages 18-70; 72.80% female; 81.58% White). METHODS: We conducted mixed-effects models to assess whether these mechanisms uniquely mediated outcomes. RESULTS: Improvements in quality of life were most explained by coping, (b = 0.97, SE = 0.28, CI [0.45, 1.56]), followed by mindfulness (b = 0.46, SE = 0.17, CI [0.15, 0.82]) and optimism (b = 0.39, SE = 0.12, CI [0.17, 0.65]). Improvements in depression and anxiety were most explained by mindfulness (b = -1.52, SE = 0.38, CI [-2.32, -0.85], CSIE = -0.26; b = -1.29, SE = 0.35, CI [-2.04, -0.67], CSIE = -0.23), followed by optimism (b = 0.39, SE = 0.12, CI [0.17, 0.65]; b = -0.49, SE = 0.20, CI [-0.91, -0.13]), but were not explained by coping (b = 0.22, SE = 0.43, CI [-0.62, 1.07]; b = 0.06, SE = 0.46, CI [-0.84, 0.97]), respectively. CONCLUSIONS: Targeting mindfulness, coping, and optimism in psychosocial interventions may be a promising way to improve the lives of adults with NF.


Asunto(s)
Atención Plena , Neurofibromatosis , Resiliencia Psicológica , Adulto , Humanos , Femenino , Masculino , Calidad de Vida , Neurofibromatosis/psicología , Neurofibromatosis/terapia , Habilidades de Afrontamiento , Ansiedad/terapia , Depresión/terapia
13.
J Clin Psychol Med Settings ; 31(1): 91-107, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37249719

RESUMEN

Orthopedic traumas are common, costly, and burdensome - particularly for patients who transition from acute to chronic pain. Psychosocial factors, such as pain catastrophizing and pain anxiety, increase risk for poor outcomes after injury. The Toolkit for Optimal Recovery (TOR) is a novel multi-component mind-body intervention informed by the fear-avoidance model to promote re-engagement in daily activities and prevent transition toward chronic pain and physical dysfunction. The current case series aims to 1) describe the intervention and 2) showcase the treatment course of three TOR completers from diverse geographic locations in the U.S. with distinct injury types and varying personal identities to illustrate how the intervention can be delivered flexibly. Results indicate pre-to-post program improvement in physical function, pain severity, pain catastrophizing, pain anxiety, and other relevant outcomes targeted by the intervention (i.e., depression, mindfulness, coping). Experiences of our three TOR completers suggest that integrating TOR with standard orthopedic care may promote physical recovery after injury.


Asunto(s)
Dolor Crónico , Tutoría , Humanos , Dolor Crónico/prevención & control , Dolor Crónico/psicología , Encuestas y Cuestionarios , Ansiedad/psicología , Catastrofización/psicología
14.
Clin Gerontol ; : 1-18, 2024 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-38622883

RESUMEN

OBJECTIVES: This scoping review maps the literature on psychosocial distress and coping among nursing assistants (CNAs) in long-term care facilities (LTC) during the COVID-19 pandemic onto the Social Ecological Model (SEM) of Occupational Stress. METHODS: Searches yielded 862 unique studies. Inclusion criteria were sample CNAs or equivalent in LTC; includes psychosocial variable; and collect data from February 2020-. A multi-phasic, meta-synthesis was used to synthesize qualitative data. RESULTS: We identified 20 studies (13 quantitative, 7 qualitative) conducted between March 2020 and December 2021 from 14 countries. Prevalence rates were reported for perceived stress (31-33%; n = 1 study), post-traumatic stress (42%; n = 1), anxiety (53%; n = 1), depression (15-59%; n = 2), suicidal thoughts (11-15%; n = 1), and everyday emotional burnout (28%; n = 1). Qualitative studies identified factors contributing to psychosocial distress and coping at each SEM level (i.e. individual, microsystem, organization, and peri-/extra-organizational). Quantitative studies primarily measured factors relating to psychosocial distress and coping at the individual and organizational levels. CONCLUSIONS & CLINICAL IMPLICATIONS: This review identifies specific targets for intervention for psychosocial distress among CNAs in LTC at multiple levels, including job clarity; workload; facility culture; community relations; and policy. These intervention targets remain relevant to the LTC industry beyond the context of the COVID-19 pandemic.

15.
J Neurooncol ; 163(3): 707-716, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-37440099

RESUMEN

PURPOSE: To test the effects of the Relaxation Response Resiliency Program - Neurofibromatosis (3RP-NF), a mind-body resilience program for people with NF, on resilience factors from baseline to post-treatment and 6- and 12-month follow-up. METHODS: This is a secondary analysis of a fully powered randomized clinical trial (RCT) of 3RP-NF and health education control (HEP-NF). We recruited adults with NF1, NF2, or schwannomatosis who reported stress or difficulty coping with NF symptoms. Both conditions received 8 weekly 90-minute group sessions; 3RP-NF focused on building resilience skills. We measured resilience factors via the Measure of Current Status-A (adaptive coping), Cognitive and Affective Mindfulness Scale-Revised (mindfulness), Gratitude Questionnaire-6 (gratitude), Life Orientation Test Optimism Scale (optimism), and Medical Outcomes Study Social Support Survey (perceived social support) at baseline, post-intervention, and 6- and 12-month follow-up. We used linear mixed models with completely unstructured covariance across up to four repeated measurements (baseline, post-treatment, and 6- and 12-month follow-up) to investigate treatment effects on resilience factors. RESULTS: We enrolled 228 individuals (Mage=42.7, SD = 14.6; 74.5% female; 87.7% White; 72.8% NF1, 14.0% NF2, 13.2% schwannomatosis). Within groups, both 3RP-NF and HEP-NF showed statistically significant improvements in all outcomes across timepoints. 3RP-NF showed significantly greater improvement in adaptive coping compared to HEP-NF from baseline to post-intervention and baseline to 6 months (Mdifference= 0.29; 95% CI 0.13-0.46; p < 0.001; Mdifference= 0.25; 95% CI 0.07-0.33; p = 0.005); there were no other between-group differences amongst the remaining resilience factors. CONCLUSION: 3RP-NF showed promise in sustainably improving coping abilities amongst people with NF. TRIAL REGISTRATION INFORMATION: ClinicalTrials.gov Identifier: NCT03406208. Registration submitted December 6, 2017, first patient enrolled October 2017.


Asunto(s)
Neurilemoma , Neurofibromatosis , Neoplasias Cutáneas , Femenino , Humanos , Adulto , Masculino , Neurofibromatosis/terapia , Neurofibromatosis/psicología , Adaptación Psicológica
16.
Cogn Behav Neurol ; 36(1): 19-27, 2023 03 01.
Artículo en Inglés | MEDLINE | ID: mdl-36651958

RESUMEN

BACKGROUND: Emotional distress can lead to suicidal ideation and potentially suicide completion, yet there is very little literature on suicidal ideation in individuals with a diagnosis of neurofibromatosis (NF; NF1, NF2, and schwannomatosis). OBJECTIVE: To examine the baseline occurrence, severity, and clinical correlates of suicidal ideation in adults with NF. METHOD: Individuals with NF (N = 220) completed assessments measuring depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder-7), perceived stress (Perceived Stress Scale-10), pain (Graded Chronic Pain Scale and PROMIS Pain Interference Short Form 8a), and general quality of life (World Health Organization Quality of Life-Brief version) before beginning a two-arm, single-blind randomized control trial of a live-video mind-body program for stress management and resiliency. RESULTS: Nineteen percent (n = 42) of the individuals experienced suicidal ideation (ie, >0; ideation present several days or greater). More individuals with NF2 experienced suicidal ideation compared with those with NF1 or schwannomatosis. All of the clinical variables except pain intensity were significantly correlated ( P < 0.01) with greater suicidal ideation. Suicidal ideation in individuals with NF was comparable to or higher than that in other medical populations (eg, cancer, dermatological, neurologic). Depression and poor psychological quality of life significantly increased the risk for suicidal ideation. CONCLUSION: Suicidal ideation was relatively prevalent in individuals with NF seeking participation in a mind-body randomized controlled trial. NF clinicians should be prepared to discuss these concerns and provide resources when suicidal ideation is present. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov (Identifier NCT03406208).


Asunto(s)
Neurofibromatosis , Ideación Suicida , Humanos , Adulto , Calidad de Vida , Método Simple Ciego , Dolor , Depresión/psicología
17.
J Behav Med ; 46(5): 890-896, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-36892781

RESUMEN

BACKGROUND: Cardiac arrest (CA) survivors experience continuous exposures to potential traumas though chronic cognitive, physical and emotional sequelae and enduring somatic threats (ESTs) (i.e., recurring somatic traumatic reminders of the event). Sources of ESTs can include the daily sensation of an implantable cardioverter defibrillator (ICD), ICD-delivered shocks, pain from rescue compressions, fatigue, weakness, and changes in physical function. Mindfulness, defined as non-judgmental present-moment awareness, is a teachable skill that might help CA survivors cope with ESTs. Here we describe the severity of ESTs in a sample of long-term CA survivors and explore the cross-sectional relationship between mindfulness and severity of ESTs. METHODS: We analyzed survey data of long-term CA survivors who were members of the Sudden Cardiac Arrest Foundation (collected 10-11/2020). We assessed ESTs using 4 cardiac threat items from the Anxiety Sensitivity Index-revised (items range from 0 "very little" to 4 "very much") which we summed to create a score reflecting total EST burden (range 0-16). We assessed mindfulness using the Cognitive and Affective Mindfulness Scale-Revised. First, we summarized the distribution of EST scores. Second, we used linear regression to describe the relationship between mindfulness and EST severity adjusting for age, gender, time since arrest, COVID-19-related stress, and loss of income due to COVID. RESULTS: We included 145 CA survivors (mean age: 51 years, 52% male, 93.8% white, mean time since arrest: 6 years, 24.1% scored in the upper quarter of EST severity). Greater mindfulness (ß: -30, p = 0.002), older age (ß: -0.30, p = 0.01) and longer time since CA (ß: -0.23, p = 0.005) were associated with lower EST severity. Male sex was also associated with greater EST severity (ß: 0.21, p = 0.009). CONCLUSION: ESTs are common among CA survivors. Mindfulness may be a protective skill that CA survivors use to cope with ESTs. Future psychosocial interventions for the CA population should consider using mindfulness as a core skill to reduce ESTs.


Asunto(s)
COVID-19 , Paro Cardíaco , Atención Plena , Humanos , Masculino , Persona de Mediana Edad , Femenino , Paro Cardíaco/complicaciones , Paro Cardíaco/terapia , Paro Cardíaco/psicología , Ansiedad/epidemiología , Sobrevivientes/psicología
18.
Clin Orthop Relat Res ; 481(6): 1088-1100, 2023 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-36346734

RESUMEN

BACKGROUND: Good clinical outcomes in orthopaedics are largely dictated by the biomedical model, despite mounting evidence of the role of psychosocial factors. Understanding orthopaedic providers' conceptualizations of good clinical outcomes and what facilitates and hinders them may highlight critical barriers and opportunities for training providers on biopsychosocial models of care and integrating them into practice. QUESTIONS/PURPOSES: (1) How do orthopaedic trauma healthcare providers define good clinical outcomes for their patients after an acute orthopaedic injury? (2) What do providers perceive as barriers to good outcomes? (3) What do providers perceive as facilitators of good outcomes? For each question, we explored providers' responses in a biopsychosocial framework. METHODS: In this cross-sectional, qualitative study, we recruited 94 orthopaedic providers via an electronic screening survey from three Level I trauma centers in geographically diverse regions of the United States (rural southeastern, urban southwestern, and urban northeastern). This study was part of the first phase of a multisite trial testing the implementation of a behavioral intervention to prevent chronic pain after acute orthopaedic injury. Of the 94 participants who were recruited, 88 completed the screening questionnaire. Of the 88 who completed it, nine could not participate because of scheduling conflicts. Thus, the final sample included 79 participants: 48 surgeons (20 attendings, 28 residents; 6% [three of 48] were women, 94% [45 of 48] were between 25 and 55 years old, 73% [35 of 48] were White, and 2% [one of 48] were Hispanic) and 31 other orthopaedic professionals (10 nurse practitioners, registered nurses, and physician assistants; 13 medical assistants; five physical therapists and social workers; and three research fellows; 68% [21 of 31] were women, 97% [30 of 31] were between 25 and 55 years old, 71% [22 of 31] were White, and 39% [12 of 31] were Hispanic). Using a semistructured interview, our team of psychology researchers conducted focus groups, organized by provider type at each site, followed by individual exit interviews (5- to 10-minute debriefing conversations and opportunities to voice additional opinions one-on-one with a focus group facilitator). In each focus group, providers were asked to share their perceptions of what constitutes a "good outcome for your patients," what factors facilitate these outcomes, and what factors are barriers to achieving those outcomes. Focus groups were approximately 60 minutes long. A research assistant recorded field notes during the focus groups to summarize insights gained and disseminate findings to the broader research team. Using this procedure, we determined that thematic saturation was reached for all topics and no additional focus groups were necessary. Three independent coders identified the codes of good outcomes, outcome barriers, and outcome facilitators and applied this coding framework to all transcripts. Three separate data interpreters collaboratively extracted themes related to biomedical, psychological, and social factors and corresponding inductive subthemes. RESULTS: Although orthopaedic providers' definitions of good outcomes naturally included biomedical factors (bone healing, functional independence, and pain alleviation), they were also marked by nuanced psychosocial factors, including the need for patients to recover from psychological trauma associated with injury and feel heard and understood-not just as outcome facilitators, but also as key outcomes themselves. Regarding perceived barriers to good outcomes, providers interwove psychological and biomedical factors (for example, "if they're a smoker, if they have depression, anxiety…") and discussed how psychological dysfunction (for example, maladaptive avoidance or fear of reinjury) can limit key behaviors during recovery (such as adherence to physical therapy regimens). Unprimed, providers also cited resiliency-related terms from psychological research, including (low) "self-efficacy," "catastrophic thinking," and (lack of) psychological "hardiness" as barriers. Regarding perceived facilitators of good outcomes, various social and socioeconomic factors emerged, including a biosocial connection between recovery, social support, and "privilege" (such as occupation or education). These perspectives emerged across sites and provider types. CONCLUSION: Although the biomedical model prevails in clinical practice, providers across all sites, in various roles, defined good outcomes and their barriers and facilitators in terms of interconnected biopsychosocial factors without direct priming to do so. Thus, similar Level I trauma centers may be more ready to adopt biopsychosocial care approaches than initially expected. CLINICAL RELEVANCE: Providers' perspectives in this study aligned with a growing body of research on the role of biomedical and psychosocial factors in surgical outcomes and risk of transition to chronic pain. To translate these affirming attitudes into practice, other Level I trauma centers could encourage leaders who adopt biopsychosocial approaches to share their perspectives and train other providers in biopsychosocial conceptualization and treatment.


Asunto(s)
Dolor Crónico , Ortopedia , Humanos , Femenino , Estados Unidos , Adulto , Persona de Mediana Edad , Masculino , Dolor Crónico/diagnóstico , Dolor Crónico/terapia , Estudios Transversales , Investigación Cualitativa , Personal de Salud/psicología
19.
Aging Ment Health ; 27(4): 695-707, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-35100922

RESUMEN

OBJECTIVES: We developed a group-based program (My Healthy Brain, MHB) to engage older adults at-risk for dementia in healthy lifestyles. We report on a two-part study to adapt MHB by incorporating mindfulness skills, using mobile health technology to monitor and reinforce behaviors, and delivering it via live video. METHODS: Participants were older adults (age ≥ 60) with subjective cognitive decline (SCD) and at least one lifestyle risk factor. In Aim 1 (n = 11, 2 groups), we conducted focus groups to obtain qualitative feedback on proposed adaptations. In Aim 2 (n = 10), we conducted a virtual open pilot with exit interviews to explore the feasibility and outcomes of the adapted MHB. RESULTS: Thematic analysis revealed: (1) barriers and facilitators to healthy lifestyles, (2) positive impressions of MHB, (3) interest in mindfulness skills, and (4) openness to study technologies. MHB met a-priori feasibility benchmarks and was associated with improvements in cognition, lifestyle (e.g. physical function), and proposed mechanisms (e.g. mindfulness). Exit interviews confirmed high feasibility and satisfaction. CONCLUSION: The integration of mindfulness, live video, and mobile health technologies was feasible and promising for improving healthier lifestyles. The results inform the next feasibility RCT of MHB to prepare for efficacy testing.Supplemental data for this article is available online at http://dx.doi.org/10.1080/13607863.2022.2032600.


Asunto(s)
Demencia , Atención Plena , Humanos , Anciano , Atención Plena/métodos , Estudios de Factibilidad , Estilo de Vida , Factores de Riesgo , Demencia/prevención & control
20.
Neuropsychol Rehabil ; : 1-21, 2023 Jul 27.
Artículo en Inglés | MEDLINE | ID: mdl-37497984

RESUMEN

PURPOSE: Young adults with anxiety are vulnerable to developing persistent symptoms following concussions. In order to develop psychosocial interventions to prevent persistent post-concussion symptoms, we need to understand patients' 1) experiences with treatments offered by health care providers; 2) experiences with attempted concussion management strategies; and 3) needs after their injury. METHODS: We conducted in-depth interviews with 17 young adults with recent (≤ 10 weeks) concussions who have at least mild anxiety (Generalized Anxiety Disorder Assessment-7 ≥ 5). We used a hybrid deductive-inductive approach to thematic analysis. RESULTS: Findings provide insight into recommended treatments (e.g., active/avoidant strategies, accommodations, referrals), attempted strategies (e.g., lifestyle changes, pacing, relationships, acceptance-based coping skills), and patient needs (e.g., education, accommodations, referrals for cognitive and emotional skills). Participants frequently expressed that treatment recommendations were confusing and difficult to implement. They initiated non-prescribed strategies that helped promote recovery and expressed a desire for more interdisciplinary treatment and education on concussions. CONCLUSION: Patients' perceptions of health care provider recommendations after concussions did not fully meet patients' perceived needs. Young adults with concussions and anxiety would benefit from more education, guidance, and psychosocial and rehabilitation services. Addressing these gaps may help align treatments with patients' needs and therefore help optimize their recovery.

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