RESUMEN
Movement disorder specialists have limited information on the specifics of how patients with Parkinson's disease (PD) spend their time. We deemed it important to examine the relationships among activity and daily energy expenditure (DEE), non-motor symptoms, and body mass index in veterans with PD who were outpatients at a Veterans Affairs medical center. In this exploratory study, we mailed demographic and activity questionnaires and gathered data on 100 patients. Activity was categorized into five domains and three intensity levels, and DEE was measured in kilocalories. Light activities accounted for 64.9% of DEE (9.1 h), moderate activities for 32.9% (2.1 h), and vigorous activities for 2.2% (0.1 h) of DEE. Television viewing comprised 10.6% (2.5 h) of the day. The effects of non-motor symptoms were significantly associated with more time spent on activities of daily life (ADL). Patients rated fatigue and pain as having the greatest impact on their daily activities. The overweight/obese group of PD patients expended more overall DEE (p = 0.044) and more DEE on social activities (p = 0.024) and light intensity activities (p = 0.021) than did the underweight/normal group. Leisure activities for both groups changed from active to passive. Veterans with PD primarily expended DEE on ADL, TV viewing, and light intensity activities. Television viewing time may have been under reported. Movement disorder specialists can be more proactive in referring patients to physical therapy and encouraging their participation in community exercise and support groups.
Asunto(s)
Actividades Recreativas , Actividad Motora/fisiología , Enfermedad de Parkinson/epidemiología , Medio Social , Veteranos , Anciano , Anciano de 80 o más Años , Atención Ambulatoria/métodos , Femenino , Humanos , Actividades Recreativas/psicología , Masculino , Procesos Mentales/fisiología , Persona de Mediana Edad , Enfermedad de Parkinson/fisiopatología , Enfermedad de Parkinson/psicología , Encuestas y Cuestionarios , Veteranos/psicologíaRESUMEN
Patients with Parkinson's disease (PD) commonly exhibit weight loss (WL) which investigators attribute to various factors, including elevated energy expenditure. We tested the hypothesis that daily energy expenditure (DEE) and its components, resting energy expenditure (REE) and physical activity (PA) energy expenditure (PAEE), are elevated in WL compared with weight stable (WS) PD patients. We measured DEE in 10 PD WL patients and 10 PD WS patients using doubly labeled water (DLW). PAEE was estimated with DLW, activity monitors, and activity questionnaires. REE was measured with indirect calorimetry. We evaluated energy intake (EI) with a patient's 3-day food diary. Data was assessed employing SPSS, Spearman correlation coefficients, and Bland and Altman plots. There was no difference in DEE between the WL and WS groups measured with DLW. There were no differences in REE and EI between groups. DEE (r = 0.548, P < 0.05) and PAEE (r = 0.563, P < 0.01) are related with caloric intake. The WL group had higher PA than the WS group (P < 0.042) only when measured with wrist activity monitors. Results suggest that WL in PD patients cannot be fully explained by an increase in DEE. Large longitudinal studies to examine multiple relationships between variables might provide us with a better understanding of WL among PD patients.
Asunto(s)
Metabolismo Energético/fisiología , Actividad Motora/fisiología , Enfermedad de Parkinson/fisiopatología , Pérdida de Peso/fisiología , Anciano , Anciano de 80 o más Años , Índice de Masa Corporal , Humanos , Masculino , Encuestas y CuestionariosRESUMEN
Researchers estimate that 89% of people with Parkinson's disease (PD) have a speech or voice disorder including disorders of laryngeal, respiratory, and articulatory function. Despite the high incidence of speech and voice impairment, studies suggest that only 3-4% of people with PD receive speech treatment. The authors review the literature on the characteristics and features of speech and voice disorders in people with PD, the types of treatment techniques available, including medical, surgical, and behavioral therapies, and provide recommendations for the current efficacy of treatment interventions and directions of future research.
Asunto(s)
Trastornos de la Articulación/terapia , Disartria/terapia , Enfermedad de Parkinson/complicaciones , Trastornos de la Voz/terapia , Trastornos de la Articulación/complicaciones , Disartria/complicaciones , Humanos , Trastornos de la Voz/complicacionesRESUMEN
OBJECTIVE: To identify and compare the primary existential, physical, and psychosocial stressors affecting patients with ALS and their caregivers. Health care providers, together with patients and their caregivers, are challenged to identify both physical and psychosocial concerns that have the greatest impact on quality of life over the course of a serious illness. It is also helpful to understand the priorities of these concerns from the patients' and caregivers' perspectives so that we can render optimal care and help patients and their families with the myriad problems that accompany a progressive and fatal disease. METHODS: We analyzed responses from the first 66 patients with ALS and 61 ALS caregivers who attended the Baylor College of Medicine, Department of Neurology, Vicki Appel MDA ALS Clinic and who completed our internally generated 19-item survey. Subjects were asked to choose their three most important concerns. For analysis purposes we categorized the data into three domains: existential, physical, and psychosocial. Demographic data were collected. The Appel ALS Rating Scale (AALS) was used to measure disease symptom severity. RESULTS: Sixty-six patients (45 men, 21 women) with a mean age of 57.9 (range 30-82) years and 61 caregivers completed the checklist. At the time the patients completed the survey, their mean AALS total score was 77.0 (range 34-132), indicating mild to moderate disability. The most important stressors identified by patients and caregivers were existential concerns (86.4% of patients and 79.7% of caregivers) and physical stressors (80.3% of patients and 76.3% of caregivers). Less than 50% of both groups endorsed psychosocial stressors (38%). However, when we analyzed the domain specific items, there was a significant difference between patients and caregivers on worries about the patient's dependency (37.9% of patients and 6.8% of caregivers). DISCUSSION: Health care professionals should apply a holistic approach to treatment and care of patients with ALS. Families should be included in the process, and it should not be assumed that patients and caregivers will agree on all issues. Future research should focus on therapeutic interventions to help ALS patients and their families cope with the multiple stressors accompanying a catastrophic illness.
Asunto(s)
Esclerosis Amiotrófica Lateral/psicología , Actitud Frente a la Salud , Cuidadores/psicología , Servicios de Salud/estadística & datos numéricos , Estrés Fisiológico , Adaptación Psicológica , Adulto , Anciano , Anciano de 80 o más Años , Esclerosis Amiotrófica Lateral/epidemiología , Estudios Transversales , Recolección de Datos/estadística & datos numéricos , Familia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Apoyo Social , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To compare amyotrophic lateral sclerosis (ALS) patients and their caregivers on measures of quality of life (QOL), depression, and their attitudes toward treatment options. METHODS: Over a 14-month period, we analyzed responses from 27 ALS patients and 19 ALS caregivers as they arrived at the Department of Neurology, Baylor College of Medicine, Vicki Appel MDA, ALS Clinic, and those who completed the study measures. Patients were given the Appel ALS Rating Scale (AALS), the ALS Functional Rating Scale (ALSFRS), McGill Quality of Life Questionnaire Single-Item Scale (MQOL-SIS), and the Beck Depression Inventory-II (BDI-II). An internally generated scale of 1-7 was used to measure perception of emotional support, QOL for others (i.e., the patient's perception of the caregiver's QOL and the caregiver's perception of the patient's QOL), and experience of pain. Attitudes toward treatment options were assessed by yes/no/uncertain responses. Caregivers were administered all of the above measures except the AALS, ALSFRS, and pain scale. Percentage, mean, and standard deviation values were determined. Significance levels were also calculated. RESULTS: Twenty-seven patients with a mean age of 57.2 (range 34-81) years and nineteen caregivers with a mean age of 56.9 (range 28-82) years completed the study. The patients were of moderate disease severity with a mean AALS total score of 76.3 (range 39-134) and a mean ALSFRS score of 28.4 (range 12-40). The mean rating of QOL for patients was 5.9 and the mean rating of QOL for caregivers was 5.7 (range 1-7). The patients reported slightly less depression (9.8) than their caregivers (10.7) (range 0-63). There was, however, no significant difference between patients and caregivers on scores of QOL and depression. Patients tended to overestimate caregivers' QOL by a small degree, whereas caregivers tended to underestimate the patients' QOL by a greater degree. Over one-half of both groups would consider percutaneous esophageal gastrostomy (PEG) placement. Patient and caregiver responses to the use of BIPAP differed. Though over half of both groups endorsed the idea of future BIPAP use, more patients (41%) than caregivers (5%) were uncertain. Only 3% of patients responded negatively compared to 32% of caregivers. Both groups were only minimally interested in future invasive ventilation. DISCUSSION: Factors contributing to quality of life, depression, and attitudes toward treatment options need to be periodically explored with patients and caregivers throughout the course of the illness. Health care professionals should recognize that the needs and goals of the two groups might differ. For both patients and caregivers, health care professionals should provide education and opportunities for discussion centered on the issues followed by referrals and interventions appropriate to the situation.