Replication and reliability of Parkinson's disease clinical subtypes.

BACKGROUND: We recently identified three distinct Parkinson's disease subtypes: "motor only" (predominant motor deficits with intact cognition and psychiatric function); "psychiatric & motor" (prominent psychiatric symptoms and moderate motor deficits); "cognitive & motor" (cognitive and motor deficits). OBJECTIVE: We used an independent cohort to replicate and assess reliability of these Parkinson's disease subtypes. METHODS: We tested our original subtype classification with an independent cohort (N = 100) of Parkinson's disease participants without dementia and the same comprehensive evaluations assessing motor, cognitive, and psychiatric function. Next, we combined the original (N = 162) and replication (N = 100) datasets to test the classification model with the full combined dataset (N = 262). We also generated 10 random split-half samples of the combined dataset to establish the reliability of the subtype classifications. Latent class analyses were applied to the replication, combined, and split-half samples to determine subtype classification. RESULTS: First, LCA supported the three-class solution - Motor Only, Psychiatric & Motor, and Cognitive & Motor- in the replication sample. Next, using the larger, combined sample, LCA again supported the three subtype groups, with the emergence of a potential fourth group defined by more severe motor deficits. Finally, split-half analyses showed that the three-class model also had the best fit in 13/20 (65%) split-half samples; two-class and four-class solutions provided the best model fit in five (25%) and two (10%) split-half replications, respectively. CONCLUSIONS: These results support the reproducibility and reliability of the Parkinson's disease behavioral subtypes of motor only, psychiatric & motor, and cognitive & motor groups.

Training Neurodegenerative Disease Support Group Leaders: A New Support Group Functioning Scale.

Support group leaders play pivotal roles in maintaining healthy community support groups; however, these leaders also have personal support needs and typically lack formal training in managing complex behaviors of neurodegenerative disorders. A support group well-being questionnaire, assessing support group functioning, was developed and piloted among participants of an educational training program designed for support group leaders of various neurodegenerative disorder-specific support groups. An exploratory factor analysis evaluated the questionnaire's psychometric properties and identified a reliable single factor five-item solution, which was titled the Support Group Functioning Scale (SGFS). Preliminary interpretation guidelines were proposed. Development of this scale is a first step in identifying support group leaders' needs as they provide frontline assistance to caregivers and individuals with neurodegenerative illnesses. This tool shows promise as an efficient way to identify support groups in need of assistance and to assess the impact of trainings on support group functioning. Further validation of the scale is needed.

Caregiver-identified needs and barriers to care in Parkinson's disease.

Perceptions of service needs and barriers to care among caregivers of individuals with Parkinson's disease have not been well explored. The purpose of this study was to assess caregiver perceptions of their own and patients' medical and supportive service needs. An online and paper survey was disseminated to a sample of caregivers (n = 66) of individuals with Parkinson's disease. Although caregivers reported positive quality of life and adjustment to caregiving, nearly half of the sample endorsed feeling stressed about caregiving. Caregivers reported that services for symptom management, coping with changes in lifestyle, future planning, relationships, and cognition, and wellness strategies were most needed. Reported barriers to patients accessing care included limited service availability and a lack of insurance coverage for services. These findings suggest a need to improve access to services for patients and increased efforts to promote caregiver wellness at movement disorder specialty clinics.

Patient-reported Needs, Non-motor Symptoms, and Quality of Life in Essential Tremor and Parkinson's Disease.

BACKGROUND: Non-motor symptoms, quality of life, service needs, and barriers to care of individuals with movement disorders are not well explored. This study assessed these domains within a sample of individuals with essential tremor (ET) and Parkinson's disease (PD). METHODS: A survey exploring symptoms, needs, and barriers to care was disseminated to a convenience sample (N = 96) of individuals with a primary diagnosis of ET (N = 19) or PD (N = 77). RESULTS: Similarities in overall quality of life and impact on daily functioning were found across individuals with ET and PD. Noteworthy differences included endorsement of different types of service needs and utilization patterns and fewer non-motor symptoms reported among those with ET (M = 6.1, SD = 2.4) than those with PD (M = 10.4, SD = 3.4). Non-motor symptoms significantly impacted movement disorder-related quality of life for both diagnostic groups, but this relationship was stronger for individuals with ET, t(12) = 3.69, p = 0.003, ß = 0.73 than with PD, t(56) = 4.00, p<0.001, ß = 0.47. Individuals with ET also reported higher rates of stigma (31.6% vs. 7.8%) and greater impact of non-motor symptoms on emotional well-being, R (2) = 0.37, F(1, 13) = 7.17, p = 0.020. DISCUSSION: This is the first study to describe and compare the needs, barriers to care, and impact on quality of life of two distinct movement disorder groups. Our results support the recent efforts of the field to identify interventions to address the non-motor symptoms of movement disorders and indicate need for greater appreciation of the specific differences in symptoms and quality of life experienced across movement disorder diagnoses.