RESUMEN
PURPOSE: This article examines how issues of control, certainty, and uncertainty are experienced and managed in everyday life with multiple sclerosis (MS) and explores the ways in which people living with MS make sense of these experiences. MATERIALS AND METHODS: Qualitative interviews with 23 women and men diagnosed with MS and four relatives were carried out in Denmark. Drawing on the notion of "phenomenological uncertainty," a thematic approach was used to analyse the interview data. RESULTS: Three themes characterise participants' experience of uncertainty: the body and issues of control; symptom fluctuations and disease progression; understanding and interpreting embodied MS experiences. Shared, between the themes, is a focus on the body and multi-faceted bodily aspects of uncertainty across diverse temporalities. CONCLUSION: Phenomenological uncertainty shapes and pervades the everyday lived experience of MS in the present and future. Gaining a sense of control and certainty in the face of daily uncertainty demands ongoing self-surveillance, and the evaluation and reconciliation of fluctuating MS symptom expressions and disease progression with personal needs, abilities, and management strategies.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals and physicians should consider the lived experience of uncertainty in everyday life with MS in all their contacts with people living with MS.The multi-faceted uncertainties experienced by people living with MS should be actively acknowledged and incorporated in discussions of MS rehabilitation options and when integrating MS guideline content into activities-of-daily-living advice.Discussions of MS medical treatment options should actively consider and integrate the multi-faceted uncertainties experienced by people living with MS.
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Adaptación Psicológica , Esclerosis Múltiple , Progresión de la Enfermedad , Femenino , Humanos , Estudios Longitudinales , Masculino , Investigación Cualitativa , IncertidumbreRESUMEN
We used ecological momentary assessment (EMA) to track symptoms during a clinical trial. Thirty-six participants with major depressive disorder (MDD) and MADRS scores ≥20 were enrolled in a nonrandomized 6-week open-label trial of commercially available antidepressants. Twice daily, a mobile device prompted participants to self-report the 6 items of the HamD6 sub-scale derived from the Hamilton rating scale for depression (HamD17). Morning EMA reports asked "how do you feel now" whereas evening reports gathered a full-day impression. Clinicians who were blinded to the EMA data rated the MADRS, HamD17 and HamD6 at screen, baseline and weeks 2,4, and 6. Hierarchical linear modeling (HLM) examined the course of the EMA assessments and convergence between EMA scores and clinician ratings. HLM analyses revealed strong correlations between AM and PM EMA derived HamD6 scores and revealed significant improvements over time. EMA improvements were significantly correlated with the clinician rated HamD6 scores at endpoint and predicted clinician rated HamD6 score changes from baseline to endpoint (p < .001). There was a large correlation between EMA and clinician derived HamD6 scores at each in-person assessment after baseline. Treatment response defined by EMA matched the clinician rated HamD6 treatment responses in 33 of 36 cases (91.7%). EMA derived symptom scores appear to be efficient and valid measures to track daily symptomatic change in clinical trials and may provide more accurate measures of symptom severity than the episodic "snapshots" that are currently used as clinical outcomes. These findings support further investigation of EMA for assessment in clinical trials.
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Trastorno Depresivo Mayor , Evaluación Ecológica Momentánea , Antidepresivos/uso terapéutico , Depresión , Trastorno Depresivo Mayor/diagnóstico , Trastorno Depresivo Mayor/tratamiento farmacológico , Humanos , AutoinformeRESUMEN
The idiopathic Parkinson's disease (iPD) is a progressive neurodegenerative disorder primarily resulting in impaired movement execution. In the course of the disease symptom fluctuation is common and makes adequate treatment difficult. In this overview the current approaches using modern and especially mobile technologies for diagnosis, monitoring and treatment of iPD are presented. Currently, there are no medical aids ready for point of care application; however, the development of these technologies has great potential for improving care for patients suffering from iPD.
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Enfermedad de Parkinson , Consulta Remota , Humanos , Enfermedad de Parkinson/diagnóstico , Enfermedad de Parkinson/terapia , Consulta Remota/tendenciasRESUMEN
There are few assessments that gather valid, highly detailed data on short-term (i.e., weekly) symptom frequency/severity retrospectively. In particular, methodologies that provide valid data for research investigating symptom changes are typically prospective, expensive, and burdensome. The purpose of this study was to evaluate a new interactive and graphical assessment tool for gathering detailed information about eating-related symptom frequency/severity retrospectively over a 3-month period. A mixed eating disorder sample ( N = 113) recruited from the community provided symptom data once weekly for 12 weeks and completed the Interactive, Graphical Assessment Tool (IGAT) assessing eating disorder symptoms on three occasions to determine the test-retest and concurrent validity of the IGAT. The IGAT performed marginally better than other measures for retrospective symptom frequency assessment in the eating disorders and did so at a greater level of detail than other available tools. Future research should evaluate the IGAT with other behaviors of interest.