scholarly journals Specialist rehabilitation for people with Parkinson’s disease in the community: a randomised controlled trial

2014 ◽  
Vol 2 (51) ◽  
pp. 1-376 ◽  
Author(s):  
Heather Gage ◽  
Linda Grainger ◽  
Sharlene Ting ◽  
Peter Williams ◽  
Christina Chorley ◽  
...  

BackgroundMultidisciplinary rehabilitation is recommended for Parkinson’s disease, but evidence suggests that benefit is not sustained.Objectives(1) Implement a specialist domiciliary rehabilitation service for people with Parkinson’s and carers. (2) Provide continuing support from trained care assistants to half receiving the rehabilitation. (3) Evaluate the clinical effectiveness of the service, and the value added by the care assistants, compared with usual care. (4) Assess the costs of the interventions. (5) Investigate the acceptability of the service. (6) Deliver guidance for commissioners.DesignPragmatic three-parallel group randomised controlled trial.SettingCommunity, county of Surrey, England, 2010–11.ParticipantsPeople with Parkinson’s, at all stages of the disease, and live-in carers.InterventionsGroups A and B received specialist rehabilitation from a multidisciplinary team (MDT) – comprising Parkinson’s nurse specialists, physiotherapists, occupational therapists, and speech and language therapists – delivered at home, tailored to individual needs, over 6 weeks (about 9 hours’ individual therapy per patient). In addition to the MDT, participants in group B received ongoing support for a further 4 months from a care assistant trained in Parkinson’s (PCA), embedded in the MDT (1 hour per week per patient). Participants in control group (C) received care as usual (no co-ordinated MDT or ongoing support).Main outcome measuresFollow-up assessments were conducted in participants’ homes at 6, 24 and 36 weeks after baseline. Primary outcomes: Self-Assessment Parkinson’s Disease Disability Scale (patients); the Modified Caregiver Strain Index (carers). Secondary outcomes included: for patients, disease-specific and generic health-related quality of life, psychological well-being, self-efficacy, mobility, falls and speech; for carers, strain, stress, health-related quality of life, psychological well-being and functioning.ResultsA total of 306 people with Parkinson’s (and 182 live-in carers) were randomised [group A,n = 102 (n = 61); group B,n = 101 (n = 60); group C,n = 103 (n = 61)], of whom 269 (155) were analysed at baseline, pilot cohort excluded. Attrition occurred at all stages. A per-protocol analysis [people with Parkinson’s,n = 227 (live-in carers,n = 125)] [group A,n = 75 (n = 45); group B,n = 69 (n = 37); group C,n = 83 (n = 43)] showed that, at the end of the MDT intervention, people with Parkinson’s in groups A and B, compared with group C, had reduced anxiety (p = 0.02); their carers had improved psychological well-being (p = 0.02). People with Parkinson’s in groups A and B also had marginally reduced disability (primary outcome,p = 0.09), and improved non-motor symptoms (p = 0.06) and health-related quality of life (p = 0.07), compared with C. There were significant differences in change scores between week 6 (end of MDT) and week 24 (end of PCA for group B) in favour of group B, owing to worsening in group A (no PCA support) in posture (p = 0.001); non-motor symptoms (p = 0.05); health-related quality of life (p = 0.07); and self-efficacy (p = 0.09). Carers in group B (vs. group A) reported a tendency for reduced strain (p = 0.06). At 36 weeks post recruitment, 3 months after the end of PCA support for group B, there were few differences between the groups. Participants reported learning about Parkinson’s, and valued individual attention. The MDT cost £833; PCA support was £600 extra, per patient (2011 Great British pounds).ConclusionsFurther research is needed into ways of sustaining benefits from rehabilitation including the use of care assistants.Study registrationCurrent Controlled Trials: ISRCTN44577970.FundingThis project was funded by the National Institute for Health Research Health Services and Delivery Research programme and the South East Coast Dementias and Neurodegenerative Disease Research Network (DeNDRoN), and the NHS South East Coast. The report will be published in full inHealth Services and Delivery Research; Vol. 2, No. 51. See the NIHR Journals Library website for further project information.

2021 ◽  
Vol 11 (6) ◽  
pp. 771
Author(s):  
Fany Chuquilín-Arista ◽  
Tania Álvarez-Avellón ◽  
Manuel Menéndez-González

Parkinson’s disease (PD) is a complex disorder characterized by a wide spectrum of symptoms. Depression and anxiety are common manifestations in PD and may be determinants of health-related quality of life (HRQoL). The objective of this study is to determine the association of depression and anxiety with the dimensions of HRQoL in subjects with PD enrolled in an association of patients. Ninety-five community-based patients with PD diagnosis at different disease stages were studied. HRQoL was assessed using the Parkinson’s Disease Questionnaire (PDQ-39); depression and anxiety were assessed using the Beck Depression Inventory (BDI-II) and the State-Trait Anxiety Inventory (STAI), respectively. Our results showed that depression and anxiety were negatively associated with HRQoL measured by PDSI. Higher motor dysfunction measured by Hoehn and Yahr (H&Y) staging was also associated with worse HRQoL. Depression was the most influential variable in the model. All PDQ-39 dimensions except social support and bodily discomfort were associated with depression. Anxiety was associated with the emotional well-being and bodily discomfort dimensions. These results suggest that physicians should pay attention to the presence of psychiatric symptoms and treat them appropriately.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Kathrin Wunsch ◽  
Claudio R. Nigg ◽  
Susanne Weyland ◽  
Darko Jekauc ◽  
Claudia Niessner ◽  
...  

Abstract Background Physical activity (PA) has beneficial effects on health and health-related quality of life (HRQoL), which is a protective factor of illness and mortality. The purpose of this examination was to investigate if self-reported and device-based measures of PA were related to HRQoL in adolescents. Methods Participants (N = 1565; 54.3% female; Mage = 14.37 years, SDage = 1.99) were recruited from 167 sample points across Germany. Adolescents self-reported their PA, supplemented by a 1-week examination of device-based PA using accelerometry. Additionally, they completed the multidimensional KIDSCREEN-27 to assess HRQoL. Results Results showed that self-reported PA was correlated with overall HRQoL, Physical Well-Being, Psychological Well-Being, Social Support & Peers, and School Environment, whereas device-based PA was only correlated with Physical as well as Psychological Well-Being. Further, self-reported PA significantly predicted all facets of HRQoL except for Autonomy and Parent Relations, whereas device-based PA solely heightened the amount of explained variance in the Physical Well-Being subscale. Conclusions Findings demonstrate the importance of self-reported PA as it is related to almost all facets of HRQoL. Both measures of PA are not congruent in their relationship with HRQoL and thus implications have to be carefully considered. Future studies should investigate the direct effect of PA on HRQoL and health in a longitudinal approach to account for the causality of effects.


2013 ◽  
Vol 49 (8) ◽  
pp. 1948-1956 ◽  
Author(s):  
Phyllis N. Butow ◽  
Lynley Aldridge ◽  
Melanie L. Bell ◽  
Ming Sze ◽  
Maurice Eisenbruch ◽  
...  

2014 ◽  
Vol 41 (10) ◽  
pp. 2008-2017 ◽  
Author(s):  
Juan Carlos Torre-Alonso ◽  
Jordi Gratacós ◽  
José Santos Rey-Rey ◽  
Juan Pablo Valdazo de Diego ◽  
Ana Urriticoechea-Arana ◽  
...  

Objective.To develop/validate an instrument to measure health-related quality of life (HRQoL) in patients with psoriatic arthritis (PsA), for use in clinical studies.Methods.An item pool of 35 items was generated following standardized procedures. Item reduction was performed using clinimetric and psychometric approaches after administration to 66 patients with PsA. The resulting instrument, the VITACORA-19, consists of 19 items. Its validity content, internal consistency, test-retest reliability, known groups/convergent validity, and sensitivity to change were tested in a longitudinal and multicenter study conducted in 10 hospitals in Spain, with 323 patients who also completed the EuroQol 5-dimensional questionnaire (EQ-5D) and a health status transition item. There were 3 study groups: group A (n = 209, patients with PsA), group B (n = 71, patients with arthritis without psoriatic aspect, patients with arthrosis, and patients with dermatitis), and group C (n = 43, healthy controls).Results.The questionnaire was considered easy/very easy to answer by 94.7% of the patients with PsA. The factorial analysis clearly identified only 1 factor. Cronbach’s alpha coefficient and interclass correlation coefficients exceeded 0.90. Statistically significant differences (p < 0.001) were observed between groups: subjects from group C had better HRQoL, followed by group B, and finally group A had the worst HRQoL. The VITACORA-19 scores showed significant correlations (p < 0.001) to PsA disease activity, EQ-5D, and perceived health state, scoring the patients with better health state higher. The minimum important difference was established as an 8-point change in the global score.Conclusion.The Spanish-developed VITACORA-19, designed to measure HRQoL in patients with PsA, has good validity, reliability, and sensitivity to change.


2017 ◽  
Vol 2017 ◽  
pp. 1-6 ◽  
Author(s):  
Simon Spalthoff ◽  
Henrik Holtmann ◽  
Gertrud Krüskemper ◽  
Rüdiger Zimmerer ◽  
Jörg Handschel ◽  
...  

Background. The incidence of oral squamous cell carcinoma (OSCC) is in the top 10 of all cancer entities. Regular oral examinations by dentists play an important role in oral cancer prevention.Methods. Patients with OSCC (n=1,607) and physicians (n=1,489) completed questionnaires during the DÖSAK Rehab Study. The psychosocial and functional factors collected in these questionnaires were assessed in the present study. We compared patients who visited their dentist at least once a year (group A) with those who visited their dentist less than once a year (group B).Results. Patients in group A had significantly better health-related quality of life after tumor treatment than patients in group B. Patients in group A also had a smaller tumor size and less lymph node metastasis and lost fewer teeth during the treatment. This resulted in better prosthetic rehabilitation and better psychological status after tumor treatment.Conclusions. Dentists play an important role in the early recognition of oral cancer. This study should encourage dentists to take a more active role in oral cancer prevention.


2020 ◽  
Author(s):  
Charlotte Angelhoff ◽  
Anna Lena Sundell

Abstract Purpose Considering the reports of increasing sleep problems in children, affecting health and well-being in young children and their families, we found it important to gain more knowledge about sleep and its correlation to health-related quality of life (HRQoL) in young, healthy children. The aim with this study was to describe sleep quality, sleep duration, and HRQoL in healthy 3–10-year-old children and to test associations between children’s sleep and HRQoL. Methods Parents of 160 children (average age: 6.9 years, SD ±2.2) participated in the study. Sleep onset problems (SOP), sleep maintenance problems (SMP), and sleep duration were measured by the Pediatric Insomnia Severity Index (PISI). KIDSCREEN-27 was used to measure HRQoL in five dimensions: physical well-being, psychological well-being, autonomy and parent relation, social support and peers, and school environment. Results The average score was 2.2 for SOP (SD +/-2.2) and 1.3 for SMP (SD +/-1.6). Almost all children (98%) slept between 8 and 13 hours per night. Younger children had statistically significantly more sleep problems than older children. Correlations were found between SOP and poor psychological well-being ( p < 0.05, ρ = - 0.16), and between SMP and poor psychological well-being ( p < 0.05, ρ = - 0.21), poor school environment ( p < 0.01, ρ = - 0.29), and poor social support and peers ( p < 0.05, ρ = - 0.19). Conclusion Children’s sleep associates with psychosocial well-being, school functioning and relations to peers, and need to be acknowledged in child health care settings and schools.


2020 ◽  
Vol 35 (Supplement_3) ◽  
Author(s):  
Zara Nisar ◽  
Hassan Sajjad ◽  
Nisar Anwar

Abstract Background and Aims The patients of end stage renal disease suffer a lot of psychological trauma as well as feel a lot of social burden. They mostly show psychological distress in different forms, be it impaired quality of life, depression or anxiety. The aim of our study was to find out the effect of supportive-expressive group therapy in end stage kidney disease patients in the outcome of better health related quality of life and survival. Method 181 patients were recruited in the study after consent between June 2012-June 2017. They were then assigned randomly to Group A supportive-expressive group therapy or to a Group B control group (no intervention). It was a double blinded randomized control trial. 115 patients were assigned to Group A and 66 were assigned to group B. The primary outcome was the effect on health related quality of life. Secondly, if it had any impact on survival. Significant predictors of survival were not analysed. Analysis was done by intention to treat. Results The patients of group A showed decrease in physical pain(p=0.002), mood elevation (p=0.04), compliance with treatment (p=0.001), reduced hopelessness (p=0.004), newly diagnosed depressive disorders (p=0.01) and better social life (p=0.003). Group A had 97% survival rate as compared to group B with 77%. Conclusion Supportive-expressive group therapy to patients with end stage kidney disease improves health related quality of life. It also has an effect on survival maybe because of compliance with treatment. We would like to further explore the role of Supportive-expressive group therapy in survival. Support groups should be provided to patients in developing countries like the setup of ours because it has a great impact on the betterment of the patient.


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