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3.410 The development and evaluation of an electronic patient record for physiotherapy in Parkinson's disease
S182
Wednesday, 12 December 2007
Method: NHS ethical approval was obtained. A semi structured interview schedule was prepared and piloted. People with Parkinson’s (PwP) and carers (where appropriate) were purposefully selected from the local Parkinson’s disease nurse specialist (PDNS) list to represent a range of socio-demographic groups and disease stages. After consent participants were interviewed in their home by a research fellow. PwP and their carers were asked for information jointly on personal circumstances; health and social care services accessed and informal care. They were asked separately about the impact of PD on their lives and gaps in service provision. Qualitative analysis was carried out using Nvivo to establish the main themes. A focus group of PwP, who did not have access to a PDNS, was also conducted. The same issues were raised and analysed. Results: 12 PwP (and 9 carers) were recruited and interviewed and 6 PwP attended the focus group. Preliminary analysis shows that PwP receive a broad range of services. They perceive gaps in provision and rationing, such as pressure on the time available from the PDNS. PwP who did not have access to a PDNS, had markedly different experiences, and felt they had struggled to find services to meet their needs, sometimes resorting to the private sector. Perceived gaps depended on awareness. Conclusion: Service utilisation and perceived needs vary. Signposting and facilitating access are crucial. It is important to reach all sociodemographic groups. 3.408 The level of physical activity in patients with Parkinson’s disease M. Munneke1° , E. van Rossum, D. Deeg, M. van Nimwegen, B.R. Bloem, G.F. Borm, M. van der Horst 1 Nijmegen, Netherlands Objective: To investigate the level of physical activity in patients with Parkinson’s disease (PD) in comparison to their community dwelling healthy controls. Method: The population consisted of 653 independently living PD patients (mean 68.7, SD 7.7 yrs) and 1962 community dwelling older adults without PD (65.8, 7.0 yrs). The PD population was made up of a sub-sample of the ParkNet study (Nijmegen). Of all patients, 17% were classified in Hoehn & Yahr (H&Y) stage I, 45% in stage II, 34% in stage III and 4% in stage IV. The control group was selected from the Longitudinal Aging Study Amsterdam (LASA). Both cohorts used the LASA Physical Activity Questionnaire (LAPAQ), a questionnaire that covers the frequency, duration and intensity of different physical activities. A combination of the LAPAQ score and the subject’s body weight resulted in an estimate of the daily activity related energy expenditure (kilocalories/day). The differences between PD-patients and controls are analysed using linear mixed models. Results: PD patients spent on average 520 (SD 384) kcal/day while controls spent 759 (559) kcal/day. Controlled for age, gender, marital status, employment situation and educational level, PD patients were 25% less physically active than the controls (95% confidence interval, −12% to −36%). Their physical activity levels during the first H&Y stage are already lower than those in the control group and decrease even further when they progress through the H&Y scale. As PD patients gain 10 years in age, their physical activity levels regress significantly by 27% (−19% to −35%) compared to only 4% (−11% to 4%) in the control group. Conclusion: These findings support the hypothesis that PD patients are less physically active in comparison to their controls. Further research is needed into the (in)ability of patients to improve their physical activity levels. 3.409 Evaluation of a Multidisciplinary Assessment Center for patients with Parkinson’s disease (PD) M. van der Marck1° , B.R. Bloem, M. Munneke Netherlands
1 Nijmegen,
Objective: The Parkinson Center Nijmegen (ParC) is a dedicated clinical and research centre for PD. A core element is the Multidisciplinary
Assessment Center, which offers PD patients and their families a comprehensive multidisciplinary assessment tailored to their individual needs, as priorized by patients prior to consultation. After a 3-day assessment, a detailed health plan is formulated that is then implemented within the direct vicinity of the patient’s home by regional networks of specialized health professionals (ParkNet). The objective was to evaluate the Multidisciplinary Assessment Center in terms of perceived quality of care and clinical effectiveness. Method: Thirty-nine patients [26 men, mean age 62.7 years (range 40−84 yrs), mean Hoehn and Yahr score 2.5 (1.5−4.0), mean UPDRS III score 35.9 (15−56)] and 36 carers participated. Patients were clustered in two groups: PD (n = 25) and atypical parkinsonism (AP, n = 14). Perceived quality of care was evaluated through self developed questionnaires combined with semi-structured interviews 6 months after assessment. Patients completed quality of life questionnaires (PDQL) before and 6 months after assessment. Results: The vast majority of patients and carers were satisfied about delivered care. Positive elements as mentioned by patients and carers were the specific expertise of health professionals, the comprehensive assessment, and the attention given to both patient and caregiver. Suggestions for improvements included a request for receiving a final report of the overall assessment and more information about the nature of subsequent referrals in regional ParkNet networks. Although not significant, PDQL scores improved for PD patients. Conclusion: Perceived quality of care of a Multidisciplinary Assessment Center is high among patients and carers. The clinical effectiveness of the multidisciplinary approach will be evaluated in a comprehensive, cluster controlled trial. 3.410 The development and evaluation of an electronic patient record for physiotherapy in Parkinson’s disease M. Munneke1° , M. Nijkrake, S.H.J. Keus, W. Hoogerwaard, B.R. Bloem, R.A. de Bie, E.H.M. Hendriks 1 Nijmegen, Netherlands Objective: Many Parkinson’s disease (PD) patients (>60%) use physiotherapy. However, most therapists have no PD specific expertise. To improve care, ParkNet is developed aiming to implement the evidencebased guidelines for physiotherapy in PD (see abstract ParkNet Trial-I). One step of ParkNet is the use of an internet based, PD specific physiotherapy electronic patient record (EPR), based on the worldwide first evidence based guideline for physiotherapy in PD. The EPR is decision supporting and allows supports communication with other healthcare providers. Patients are invited to fill in part of the history taking online at home. This study aims to evaluate the feasibility of the use of the EPR within ParkNet. Method: In May 2006, 46 ParkNet physiotherapists were trained (2 hours) in correct use of the EPR. In December 2006 these therapists filled in a questionnaire to evaluate the feasibility of the EPR Results: Response to the questionnaire was 74% (N = 34), of which 5 therapists had not treated PD patients for more than 1 consult. Of the remaining 29 therapists, 86% used the EPR. Reasons for not using the EPD were ‘too difficult’ and ‘too time consuming’. Strongest quality of the EPR was ‘decision supporting’ (96%). In 84%, using the EPR cost more time than using a handwritten patients record. Data of over 400 patients have been imported in the EPR. At the XVII WFN World Congress on Parkinson’s disease and Related Disorders the first results concerning (e.g.) indications for referral, treatment goals, interventions, and duration of treatments will be presented. Conclusion: It is feasible to implement the EPR in daily practice of physiotherapists treating PD patients. The EPR allows collecting patient data. In future, these data can, through benchmarking, be used evaluating guideline adherence and identifying best care in order to develop strategies to improve practice.
Wednesday, 12 December 2007
Method: NHS ethical approval was obtained. A semi structured interview schedule was prepared and piloted. People with Parkinson’s (PwP) and carers (where appropriate) were purposefully selected from the local Parkinson’s disease nurse specialist (PDNS) list to represent a range of socio-demographic groups and disease stages. After consent participants were interviewed in their home by a research fellow. PwP and their carers were asked for information jointly on personal circumstances; health and social care services accessed and informal care. They were asked separately about the impact of PD on their lives and gaps in service provision. Qualitative analysis was carried out using Nvivo to establish the main themes. A focus group of PwP, who did not have access to a PDNS, was also conducted. The same issues were raised and analysed. Results: 12 PwP (and 9 carers) were recruited and interviewed and 6 PwP attended the focus group. Preliminary analysis shows that PwP receive a broad range of services. They perceive gaps in provision and rationing, such as pressure on the time available from the PDNS. PwP who did not have access to a PDNS, had markedly different experiences, and felt they had struggled to find services to meet their needs, sometimes resorting to the private sector. Perceived gaps depended on awareness. Conclusion: Service utilisation and perceived needs vary. Signposting and facilitating access are crucial. It is important to reach all sociodemographic groups. 3.408 The level of physical activity in patients with Parkinson’s disease M. Munneke1° , E. van Rossum, D. Deeg, M. van Nimwegen, B.R. Bloem, G.F. Borm, M. van der Horst 1 Nijmegen, Netherlands Objective: To investigate the level of physical activity in patients with Parkinson’s disease (PD) in comparison to their community dwelling healthy controls. Method: The population consisted of 653 independently living PD patients (mean 68.7, SD 7.7 yrs) and 1962 community dwelling older adults without PD (65.8, 7.0 yrs). The PD population was made up of a sub-sample of the ParkNet study (Nijmegen). Of all patients, 17% were classified in Hoehn & Yahr (H&Y) stage I, 45% in stage II, 34% in stage III and 4% in stage IV. The control group was selected from the Longitudinal Aging Study Amsterdam (LASA). Both cohorts used the LASA Physical Activity Questionnaire (LAPAQ), a questionnaire that covers the frequency, duration and intensity of different physical activities. A combination of the LAPAQ score and the subject’s body weight resulted in an estimate of the daily activity related energy expenditure (kilocalories/day). The differences between PD-patients and controls are analysed using linear mixed models. Results: PD patients spent on average 520 (SD 384) kcal/day while controls spent 759 (559) kcal/day. Controlled for age, gender, marital status, employment situation and educational level, PD patients were 25% less physically active than the controls (95% confidence interval, −12% to −36%). Their physical activity levels during the first H&Y stage are already lower than those in the control group and decrease even further when they progress through the H&Y scale. As PD patients gain 10 years in age, their physical activity levels regress significantly by 27% (−19% to −35%) compared to only 4% (−11% to 4%) in the control group. Conclusion: These findings support the hypothesis that PD patients are less physically active in comparison to their controls. Further research is needed into the (in)ability of patients to improve their physical activity levels. 3.409 Evaluation of a Multidisciplinary Assessment Center for patients with Parkinson’s disease (PD) M. van der Marck1° , B.R. Bloem, M. Munneke Netherlands
1 Nijmegen,
Objective: The Parkinson Center Nijmegen (ParC) is a dedicated clinical and research centre for PD. A core element is the Multidisciplinary
Assessment Center, which offers PD patients and their families a comprehensive multidisciplinary assessment tailored to their individual needs, as priorized by patients prior to consultation. After a 3-day assessment, a detailed health plan is formulated that is then implemented within the direct vicinity of the patient’s home by regional networks of specialized health professionals (ParkNet). The objective was to evaluate the Multidisciplinary Assessment Center in terms of perceived quality of care and clinical effectiveness. Method: Thirty-nine patients [26 men, mean age 62.7 years (range 40−84 yrs), mean Hoehn and Yahr score 2.5 (1.5−4.0), mean UPDRS III score 35.9 (15−56)] and 36 carers participated. Patients were clustered in two groups: PD (n = 25) and atypical parkinsonism (AP, n = 14). Perceived quality of care was evaluated through self developed questionnaires combined with semi-structured interviews 6 months after assessment. Patients completed quality of life questionnaires (PDQL) before and 6 months after assessment. Results: The vast majority of patients and carers were satisfied about delivered care. Positive elements as mentioned by patients and carers were the specific expertise of health professionals, the comprehensive assessment, and the attention given to both patient and caregiver. Suggestions for improvements included a request for receiving a final report of the overall assessment and more information about the nature of subsequent referrals in regional ParkNet networks. Although not significant, PDQL scores improved for PD patients. Conclusion: Perceived quality of care of a Multidisciplinary Assessment Center is high among patients and carers. The clinical effectiveness of the multidisciplinary approach will be evaluated in a comprehensive, cluster controlled trial. 3.410 The development and evaluation of an electronic patient record for physiotherapy in Parkinson’s disease M. Munneke1° , M. Nijkrake, S.H.J. Keus, W. Hoogerwaard, B.R. Bloem, R.A. de Bie, E.H.M. Hendriks 1 Nijmegen, Netherlands Objective: Many Parkinson’s disease (PD) patients (>60%) use physiotherapy. However, most therapists have no PD specific expertise. To improve care, ParkNet is developed aiming to implement the evidencebased guidelines for physiotherapy in PD (see abstract ParkNet Trial-I). One step of ParkNet is the use of an internet based, PD specific physiotherapy electronic patient record (EPR), based on the worldwide first evidence based guideline for physiotherapy in PD. The EPR is decision supporting and allows supports communication with other healthcare providers. Patients are invited to fill in part of the history taking online at home. This study aims to evaluate the feasibility of the use of the EPR within ParkNet. Method: In May 2006, 46 ParkNet physiotherapists were trained (2 hours) in correct use of the EPR. In December 2006 these therapists filled in a questionnaire to evaluate the feasibility of the EPR Results: Response to the questionnaire was 74% (N = 34), of which 5 therapists had not treated PD patients for more than 1 consult. Of the remaining 29 therapists, 86% used the EPR. Reasons for not using the EPD were ‘too difficult’ and ‘too time consuming’. Strongest quality of the EPR was ‘decision supporting’ (96%). In 84%, using the EPR cost more time than using a handwritten patients record. Data of over 400 patients have been imported in the EPR. At the XVII WFN World Congress on Parkinson’s disease and Related Disorders the first results concerning (e.g.) indications for referral, treatment goals, interventions, and duration of treatments will be presented. Conclusion: It is feasible to implement the EPR in daily practice of physiotherapists treating PD patients. The EPR allows collecting patient data. In future, these data can, through benchmarking, be used evaluating guideline adherence and identifying best care in order to develop strategies to improve practice.