Patient-Reported and Performance-Based Outcome Measures for Functional Mobility and Activity Limitation in Individuals with Parkinson's Disease

Yıl 2020, , 160 - 173, 13.06.2020

Semiha Yenişehir , Veli Batur İlkim Çıtak Karakaya Mehmet Gürhan Karakaya

https://doi.org/10.21673/anadoluklin.622194

Öz

Parkinson Disease which is characterized by motor and non-motor symptoms, is the
second most common neurodegenerative disease after Alzheimer’s disease. Genetic
factors, congenital anomalies, toxic agent exposure, trauma, inflammation,
oxidative stress and damage to dopamine-producing cells in the substantia nigra
located in the deep part of the brain are included in its pathophysiology. Parkinson
Disease starts at an average age of 55-60 years, and the incidence varies
between 15-250/100.000. In Turkish studies, the incidence was indicated as
202/100.000. Primary symptoms of the Parkinson Disease are bradykinesia,
resting tremor, rigidity and postural instability. In addition to these motor
symptoms which occur due to involvement of dopaminergic system,
neuropsychiatric symptoms, autonomic and sleep disturbances, and sensory
symptoms may occur due to the involvement of serotonergic, noradrenergic,
cholinergic and autonomic systems. Posture, balance, gait impairments occur in
patients. Parkinson Disease-specific gait impairments can lead to muscle
weakness, activity limitation, physical inactivity, functional limitations and
negatively affect quality of life. In order to achieve a patient-centered rehabilitation in Parkinson Disease, it
is necessary to target treatment approaches responsive to patient preferences.
Therefore, when assessing perceived difficulty in everyday life, performance-based measures should be complemented with
patient-reported outcome measures. The aim of this study is to review the
literature about the most appropriate patient-reported outcome measures and
performance-based measures to evaluate functional mobility and activity
limitation in individuals with Parkinson Disease, and to light the way for
future clinical and research studies.

Anahtar Kelimeler

Parkinson disease, activities of daily living, mobility limitation, patient-reported outcome measure, gait

Proje Numarası

19/077/07/3/4

Parkinsonlu Bireylerde Fonksiyonel Mobilite ve Aktivite Limitasyonuna Yönelik Hasta Bildirimli ve Performansa Dayalı Sonuç Ölçümleri

Öz

Motor ve motor olmayan semptomlarla karakterize Parkinson hastalığı Alzheimer hastalığından sonra ikinci en
sık görülen nörodejeneratif hastalıktır. Patofizyolojisinde genetik faktörler,
doğumsal anomaliler, toksik ajan maruziyeti, travma, inflamasyon, oksidatif
stres ve beynin derin kısmında yer alan substansiya nigrada dopamin üreten
hücrelerin hasarı yer almaktadır. Parkinson
hastalığı ortalama 55-60 yaşlarında başlamakta, görülme sıklığı 15-250/100.000
arasında değişmektedir. Türkiye'de yapılan çalışmalarda görülme sıklığı
202/100.000 olarak belirtilmiştir. Başlıca belirtileri bradikinezi, istirahat
tremoru, rijidite ve postüral instabilite olan Parkinson
hastalığında serotonerjik, noradrenerjik, kolinerjik ve otonomik sistemin de
etkilenmesi hastada nöropsikiyatrik semptomlara, otonom bozukluklara, uyku
bozukluklarına ve duyusal belirtilere yol açmaktadır. Bu durum postür, denge ve
yürüyüş bozukluklarına neden olmaktadır. Parkinson
hastalığına özgü yürüyüş bozuklukları kas zayıflığı, aktivite limitasyonu,
fiziksel inaktivite ve fonksiyonel açıdan kısıtlılık meydana getirerek
bireylerin yaşam kalitesini olumsuz yönde etkilemektedir. Parkinson hastalığında hasta merkezli rehabilitasyonu
sağlamak için hasta tercihlerine cevap veren tedavi yaklaşımını hedeflemek
gerekir. Bu nedenle günlük yaşam aktivitelerinde algılanan zorlukların değerlendirilmesi aşamasında performansa yönelik ve hasta
bildirimli sonuç ölçümlerinin bir arada ele alınması büyük önem taşımaktadır.
Bu çalışmanın amacı, Parkinsonlu bireylerde aktivite limitasyonu ve fonksiyonel
mobiliteyi değerlendiren en uygun hasta bildirimli sonuç ölçümleri ve
performansa yönelik sonuç ölçümleri ile ilgili literatür bilgisini derlemek ve
ileride yapılacak klinik ve araştırma çalışmalarına ışık tutmaktır. 

Anahtar Kelimeler

Parkinson hastalığı, günlük yaşam aktiviteleri, mobilite limitasyonu, hasta bildirimli sonuç ölçümü, yürüyüş

Destekleyen Kurum

Muğla Sıtkı Koçman Üniversitesi Bilimsel Araştırma Projeleri Koordinasyon Birimi

Proje Numarası

19/077/07/3/4

Teşekkür

Bu çalışma, Muğla Sıtkı Koçman Üniversitesi Bilimsel Araştırma Projeleri Koordinasyon Birimi tarafından desteklenmiştir (Proje no: 19/077/07/3/4, Proje Başlık: Parkinson Hastalığına Sahip Bireylerde Dört Farklı Fonksiyonel Mobilite Testinin Psikometrik Özelliklerinin İncelenmesi).

Kaynakça

• Teri Capriotti T, Terzakis K. Parkinson Disease. Home Healthc Now. 2016:34(6):300-7. doi: 10.1097/NHH.0000000000000398. Schneider RB, Iourinets J, Richard IH. Parkinson's disease psychosis: presentation, diagnosis and management. Neurodegener Dis Manag. 2017;7(6):365-76.
• Schneider RB, Iourinets J, Richard IH. Parkinson's disease psychosis: presentation, diagnosis and management. Neurodegener Dis Manag. 2017;7(6):365-76.
• Shen X, Wong-Yu IS, Mak MK. Effects of exercise on falls, balance, and gait ability in Parkinson's disease: a meta-analysis. Neurorehabil Neural Repair. 2016;30(6):512-27.
• Marras C. Subtypes of Parkinson's disease: state of the field and future directions. Curr Opin Neurol. 2015;28(4):382-386.
• Durmuş H, Gökalp MA, Hanagasi, H.A. Prevalence of Parkinson’s disease in Baskale, Turkey: a population based study. Neurol Sci. 2015;36(3):411-13.
• Tysnes OB, Storstein A. Epidemiology of Parkinson’s disease. J Neural Transm. 2017;124(8):901–905.
• Hughes AJ, Ben-Shlomo Y, Daniel SE. What features improves the accuracy of clinical diagnosis in Parkinson’s disease: a clinical pathological study. Neurol. 1992;42(7):1142-46.
• Modestino EJ, Reinhofer A, Blum K, Amenechi C, O’Toole, P. Hoehn and Yahr staging of Parkinson’s disease in relation to neuropsychological measures. Front Biosci (Landmark Ed). 2018;23:1370-9.
• Ramaker C, Marinus J, Stiggelbout AM, &Van Hilten B. J. Systematic evaluation of rating scales for impairment and disability in Parkinson’s disease. Mov Disord. 2002;17(5):867-76.
• Verheyden G, Kampshoff C, Burnett M, Cashell J, Martinelli L, Nicholas A, et al. Psychometric properties of 3 functional mobility tests for people with Parkinson's disease. Phys Ther. 2014;94(2):230-239.876.
• Biemans MA, Dekker J, van der Woude LH. The internal consistency and validity of the Self-assessment Parkinson’s Disease Disability Scale. Clin. Rehabil. 2001;15:221-228.
• Zgaljardic DJ, Foldi NS, Borod JC. Cognitive and behavioral dysfunction in Parkinson’s disease: neuro chemical and clinicopathological contributions. J Neural Transm. 2004;111(10-11):1287-1301.
• Lohle M, Storch A, Reichmann H. Beyond tremor and rigidity: non-motor features of Parkinson’s disease. J Neural Transm. 2009;116(11):1483-92.
• Gündüz AG, Otman AS, Köse N, Bilgin S, Elibol, B. [Comparison of different balance scales in Parkinson’s disease]. Fizyoter Rehabil. 2009;20(1):17-24.
• Leavy B, Löfgren N, Nilsson M, Franzén E. Patient‐reported and performance‐based measures of walking in mild–moderate Parkinson's disease. Brain behav. 2018;8(9):e01081.
• Leddy AL, Crowner BE, Earhart GM. Utility of the Mini-BESTest, BESTest, and BESTest sections for balance assessments in individuals with Parkinson disease. J Neurol Phys Ther. 2011;35(2):90-7.
• Lim LI, van Wegen EE, de Goede CJ, Jones D, Rochester L, Hetherington V, et al. Measuring gait and gait-related activities in Parkinson’s patients own home environment: a reliability, responsiveness and feasibility study. Parkinsonism Relat Disord. 2005;11(1):19-24.
• Combs SA, Diehl MD, Filip J, Long E. Short-distance walking speed tests in people with Parkinson’s disease: reliability, responsiveness, and validity. Gait Posture. 2014;39(2):784-88.
• Lang JT, Kassan TO, Devaney LL. Colon-Semenza C, Joseph MF. Test-Retest Reliability and Minimal Detectable Change for the 10-Meter Walk Test in Older Adults With Parkinson's disease. J Geriatr Phys Ther. 2016;39:165-70.
• Duncan RP, Leddy AL, Earthart GM. Five times sit-to-stand test performance in Parkinson's disease. Arch Phys Med Rehabil. 2011;92(9):1431-6.
• Steffen T, Seney M. Test-Retest Reliability and Minimal Detectable Change on Balance and Ambulation Tests, the 36-Item ShortForm Health Survey, and the Unified Parkinson Disease Rating Scale in People With Parkinsonism. Phys Ther. 2008;88(6):733-46.
• Duncan RP, Earhart GM. Four square step test performance in people with Parkinson disease. J Neurol Phys Ther. 2013;37(1):2-8.
• Morris S, Morris E, Iansek R. Reliability of measurements obtained with the Timed “Up and Go” Test in people with Parkinson’s disease. Phys Ther. 2001;81(2):810-17.
• Van Lummel RC, Walgaard S, Hobert MA, Maetzler W, Van Dieën JH, Galindo-Garre F, et al. Intra-Rater, inter-rater and test-retest reliability of an instrumented timed up and go (iTUG) Test in patients with Parkinson’s disease. PloS one. 2016;11(3):e0151881.
• Kleiner AFR, Pacifici I, Vagnini A, Camerota F, Celletti C, Stocchi F, et al. Timed Up and Go evaluation with wearable devices: Validation in Parkinson's disease. J Bodyw Mov Ther. 2018;22(2):390-5.
• Haas B, Clarke E, Elver L, Gowman E, Mortimer E, Byrd E. The reliability and validity of the L-test in people with Parkinson’s disease. Physiotherapy. 2019;105(1):84-89.
• Huang S-L, Hsieh C-L, Wu R-M, Tai C-H, Lin C-H, Lu W-S. Minimal detectable change of the timed “up & go” test and the dynamic gait index in people with Parkinson disease. Phys Ther. 2011;91(1):114-21.
• Dibble LE, Christensen J, Ballard DJ, Foreman KB. Diagnosis of fall risk in Parkinson disease: an analysis of individual and collective clinical balance test interpretation. Phys Ther. 2008;88(3):323-32.
• Kegelmeyer DA, Kloos AD, Thomas KM, Kostly SK. Reliability and validity of the Tinetti Mobility Test for individuals with Parkinson disease. Phys Ther. 2007;87(10):1369-78.
• Nieuwboer A, De Weerdt W, Dom R, Bogaerts, K, Nuyens G. Development of an activity scale for individuals with advanced parkinson disease: reliability and “on-off” variability. Phys ther. 2000;80(11):1087-96.
• Keus SHJ, Nieuwboer a, Bloem, BR, Borm GF, Munneke M. Clinimetric analyses of the modified parkinson activity scale. Parkinsonism Relat Disord. 2009;15(4):263–69.
• Pearson MJT, Lindop FA, Mockett SP, Saunders L. Validity and interrater reliability of the Lindop Parkinson’s Disease Mobility Assessment: a preliminary study. J Physio 2009;95:126-33.
• Morais LC, Pereira MP, Lah, J, Pelicioni PHS, Rinaldi NM, G LTB. Predictors of the functional reach test in people with Parkinson's disease. J. Phys. Educ. 2017;28,e2846.
• Qutubuddin AA, Pegg PO, Cifu DX, Brown R, McNamee S, Carne W. Validating the Berg Balance Scale for patients with Parkinson’s disease: a key to rehabilitation evaluation. Arch Phys Med Rehabil. 2005;86(4):789-92.
• Oğuz S, Tekeoğlu A, Mutluay F, İşsever H, Kızıltan G, Özekmekçi S, et al. [Evaluation of upper extremity performance in patients with Parkinson’s disease: comparison of Nine Hole Peg Test values with Unified Parkinson’s Disease Rating Scale]. Fizyoter Rehabil. 2009;20(2):49-55.
• Potter K, Brandfass K. The Mini-Balance Evaluation Systems Test (Mini-BESTest). J Physiother. 2015;61(4):25:225.
• American Thoracic Society. ATS Statement: Guidelines for the Six-Minute Walk Test. Am J Respir Crit Care Med. 2002;166: 111-117.
• Nocera JR, Stegemöller EL, Malaty IA, Okun MS, Marsiske M, Hass CJ, et al. Using the Timed Up & Go test in a clinical setting to predict falling in Parkinson's disease. Arch Phys Med Rehabil. 2013;94(7):1300-5.
• Bohannon RW. Reference values for the Timed Up and Go Test: a descriptive meta-analysis. J Geriatr Phys Ther. 2006;29(2):64-8.
• Shumway-Cook A, Brauer S, Woollacott M. Predicting the probability for falls in community dwelling older adults using the Timed Up and Go Test. Phys Ther. 2000;80(9):896-903.
• Ağırcan D. 2009. Tinetti Balance and Gait Assessment’ın (Tinetti Denge ve Yürüme Değerlendirmesi) Türkçeye uyarlanması, geçerlilik ve güvenilirliği. (Yayımlanmamış Yüksek Lisans Tezi). Pamukkale Üniversitesi, Denizli.
• Şahin F, Büyükavcı R, Sağ S, Doğu B, Kuran B. [Reliability and Validity of the Turkish Version of the Berg Balance Scale in Patients With Stroke]. Türk Fiz Tıp Rehab Derg, 2013;59:170-5.
• Cheung, R. 2016. Parkinson’s disease and segmental coordination during modified figure of eight walking and turning task. (Master’s Thesis). Biomechanics Department of Biology of Physical Activity University of Jyväskylä, Jyväskylä.
• Hess R, Brach J, Piva S, VanSwearingen J. Walking skill can be assessed in older adults: validity of the Figure-of-8 Walk Test. Phys Ther. 2010;90(1):89-99.
• Jarnlo G, Nordell E. Reliability of the modified figure of eight—a balance performance test for elderly women. Physiother Theory Pract. 2003;(1):35-43.
• Bossers W, Woude L, Boersma F, Scherder E, Heuvelen M. The Groningen Meander Walking Test: a dynamic walking test for older adults with Dementia. Phys Ther. 2014;94(2):262-71.
• Fahn S, Elton R. and Members of the UPDRS Development Committee. The Unified Parkinson’s Disease Rating Scale. In: Fahn, S., Marsden, C.D., Calne, D.B. and Goldstein, M., Eds., Recent Developments in Parkinson’s Disease, Vol. 2, McMellam Health Care Information, Florham Park. 1987;153-63.
• Siderowf A, McDermott M, Kieburtz K, Blindauer K, Plumb S, Shoulson I, et al. Test–retest reliability of the unified Parkinson's disease rating scale in patients with early Parkinson's disease: results from a multicenter clinical trial. Mov Disord. 2002;17(4):758-63.
• Kerr GK, Worringham CJ, Cole MH, Lacherez PF, Wood JM, Silburn PA. Predictors of future falls in Parkinson disease. Neurology. 2010;75(2):116-24.
• Pedersen KF, Larsen JP, Aarsland D. Validation of the Unified Parkinson's Disease Rating Scale (UPDRS) section I as a screening and diagnostic instrument for apathy in patients with Parkinson's disease. Parkinsonism Relat Disord. 2008;14(3):183-6.
• Akbostancı MC, Bayram E, Yılmaz V, Rzayev S, Özkan S, Tokcaer AB, et al. Turkish standardization of movement disorders society unified Parkinson's disease rating scale and unified dyskinesia rating scale. Mov Disord Clin Pract. 2018;5(1):54-9.
• Vandervelde L, Van den Bergh PY, Goemans N, Thonnard J-L. ACTIVLIM: a Rasch-built measure of activity limitations in children and adults with neuromuscular disorders. Neuromuscul Disord. 2007;17(6):459-69.
• Vandervelde L, Dispa D, Van den Bergh PY, Thonnard J-L. A comparison between self-reported and observed activity limitations in adults with neuromuscular disorders. Arch Phys Med Rehab. 2008;89(9):1720-3.
• Kilinc M, Oksuz C, Oztuna D, Alemdaroglu I, Demirci C, Yildirim S, et al. The Turkish version of Rasch built ACTIVLIM questionnaire for Neuromuscular diseases. Neuromuscul Disord 2013;23(9):789.
• Madan, M. 2014. Parkinson hastalarında Aktivlim ölçeğinin psikometrik özelliklerinin araştırılması. (Yayımlanmamış Yüksek Lisans Tezi). Hacettepe Üniversitesi, Ankara.
• Dal Bello-Haas V, Klassen L, Sheppard MS, Metcalfe A. Psychometric properties of activity, self-efficacy, and quality-of-life measures in individuals with Parkinson disease. Physiother Can. 2011;63(1):47-57.
• McRae C, Diem G, Vo A, O’Brien C, Seeberger L. Reliability of measurements of patient health status: a comparison of physician, patient and caregiver ratings. Parkinsonism Relat Disord. 2002;8:187-92.
• Forjaz MJ, Martinez-Martin P. Metric attributes of the Unified Parkinson’s Disease Rating Scale 3.0 Battery: part II, construct and content validity. Mov Disord. 2006;21:1892–8.
• Hobson JP, Edwards NI, Meara RJ. The Parkinson's Disease Activities of Daily Living Scale: a new simple and brief subjective measure of disability in Parkinson's disease. Clin Rehabil. 2001;15(3):241-6.
• Hagell P, Hariz GM, Nilsson MH. The Parkinson's disease activities of daily living scale (PADLS) revisited. Parkinsonism Relat Disord 2009;15:p. S62.
• Jonasson SB, Hagell P, Hariz GM, Iwarsson S, Nilsson MH. Psychometric Evaluation of the Parkinson's Disease Activities of Daily Living Scale. Parkinsons Dis. 2017;2017:4151738.
• Peto V, Jenkinson C, Fitzpatrick R. PDQ-39: a review of the development, validation and application of a Parkinson’s disease quality of life questionnaire and its associated measures. J Neurol 1998;245(1):S10-S4.
• Hagell P, Nygren C. The 39 item Parkinson’s disease questionnaire (PDQ-39) revisited: implications for evidence based medicine. J Neurol Neurosurg Psychiatry. 2007;78(11):1191-8.
• Peto V, Jenkinson C, Fitzpatrick R. Determining minimally important differences for the PDQ‐39 Parkinson's disease questionnaire. Age Ageing. 2001;30(4):299-302.
• Jenkinson C, Fitzpatrick R, Peto V, Greenhall R, Hyman N. The PDQ-8: development and validation of a short-form Parkinson's disease questionnaire. Psychol Health. 1997;12(6):805-14.
• Kahraman T, Genç A, Söke F, Göz E, Çolakoğlu BD, Keskįnoğlu P. Validity and Reliability of the Turkish Version of the 8-Item Parkinson's Disease Questionnaire. Noro Psikiyatr Ars. 2018;55(4):337-40.
• Fereshtehnejad SM, Naderi N, Rahmani A, Shahidi GA, Delbari A, Lökk J. Psychometric study of the Persian short-form eight-item Parkinson’s disease questionnaire (PDQ-8) to evaluate health related quality of life (HRQoL). Health Qual Life Outcomes 2014;12:78.
• Giladi N, Shabtai H, Simon ES, Biran S, Tal J, Korczyn AD. Construction of freezing of gait questionnaire for patients with Parkinsonism. Parkinsonism Relat Disord. 2000;6:165-70.
• Giladi N, Tal J, Azulay T, Rascol O, Brooks DJ, Melamed E, et al. Validation of the freezing of gait questionnaire in patients with Parkinson's disease. Mov Disord. 2009;24(5):655-61.
• Candan SA, Çatıker A, Özcan TŞ. Psychometric properties of the Turkish version of the freezing of gait questionnaire for patients with Parkinson’s disease. NSN 2019;36(1):44-50.
• Nieuwboer A, Rochester L, Herman T, Vandenberghe W, Emil GH, Thomaes T et al. Reliability of the New Freezing of Gait Questionnaire: Agreement between patients with Parkinson’s Disease and their carers. Gait Posture. 2009;30(4):459-63.
• Mehdizadeh M, Martinez-Martin P, Habibi S-A, Fereshtehnejad S-M, Abasi A, Niazi Khatoon J, et al. Reliability and Validity of Fall Efficacy Scale-International in People with Parkinson’s Disease during On-and Off-Drug Phases. Parkinson’s Dis 2019;2019.
• Biemans MA, Dekker J, van der Woude LH. The internal consistency and validity of the SelfAssessment Parkinson’s Disease Disability Scale. Clin. Rehabil. 2001;15(2):221-28.
• Bladh S, Nilsson MH, Hariz G-M, Westergren A, Hobart J, Hagell P. Psychometric performance of a generic walking scale (Walk-12G) in multiple sclerosis and Parkinson’s disease. J. Neurol. 2012;259(4):729-38.
• Tinetti ME, Richman D, Powell L. Falls efficacy as a measure of fear of falling. J Gerontol 1990;45:239-43.
• Yardley L, Beyer N, Hauer K, Kempen G, Piot-Ziegler C, and Todd C. Development and initial validation of the falls efficacy scale-international (FES-I). Age Ageing. 2005;34(6):614-19.
• Ulus Y, Durmus D, Akyol Y, Terzi Y, Bilgici A, Kuru O. Reliability and validity of the Turkish version of the Falls Efficacy Scale International (FES-I) in community-dwelling older persons. Arch Gerontol Gerıat 2012;54(3):429-33.
• Santos MP, Sılva BA, Ovando AC, Ilha J,Swarowsky A. Comparison between two functional mobility scales for Parkinson's disease directly applied to physical therapy practice: cross-cultural adaptation and measurement properties. Eur J Phys Rehabil Med. 2017;53(5):664-75.
• Ellis T, Cavanaugh JT, Earhart GM, Ford MP, Foreman KB, Dibble LE. Which Measures of Physical Function and Motor Impairment Best Predict Quality of Life in Parkinson’s Disease? Parkinsonism Relat Disord. 2011;17(9):693-97.
• Brusse KJ, Zimdars S, Zalewski KR, Steffen TM. Testing functional performance in people with Parkinson disease. Phys Ther. 2005;85(2):134-41.
• King LA, Priest KC, Salarian A, Pierce D, Horak FB. Comparing the Mini-BESTest with the Berg Balance Scale to Evaluate Balance Disorders in Parkinson's Disease. Parkinson's dis. 2012;375419.
• Godi M, Franchignoni F, Caligari M, Giordano A, Turcato AM, Nardone A. Comparison of reliability, validity, and responsiveness of the mini-BESTest and Berg Balance Scale in patients with balance disorders. Phys Ther. 2013;93(2):158-67.