The Evaluation Of Quality Of Life Of Relatives Caring For Patients With Parkinson’s Disease

Dicle Tıp Dergisi / Dicle Medical Journal (2018) 45 (2) : 201-208 Original Article / Özgün Araştırma The Evaluation of Quality of Life of Relatives Caring for Patients with Parkinson’s Disease Faruk Ömer Odabaş1, Ali Ulvi Uca2 1 University of Health Sciences, Konya Health Application and research center, Department of Neurology, Konya, Turkey, ORCID: 0000-0001-9136-9388 2 Necmettin Erbakan University, Meram faculty of medicine, Department of Neurology, Konya, Turkey, ORCID: 0002-5783-8061 Received: 17.02.2018; Revised: 08.03.2018; Accepted: 22.03.2018 Abstract Objective: To evaluate quality of life (QoL) of relatives taking care of patients with idiopathic Parkinson’s disease (IDP). Methods: Sixty patients with IPD and 60 patients’ relatives were included into the study, and 50 healthy individuals consisted of the controls. In the study group, the Unified Parkinson's Disease Rating Scale (UPDRS)scores and the Hoehn-Yahr Scale (HYS) stages were determined. Depression levels of the IPD patient’s relatives and the controls were measured using the Beck Depression Inventory (BDI), while pain and fatigue levels were found via the Visual Analogue Scale (VAS), and QoL was assessed with shorth form-36 (SF-36). Findings: When the relatives of patients with IPD were compared with the controls, a statistically significance was found between pain, fatigue and depression levels and SF-36 physical and mental component scores. While a positive correlation was observed between patient’s UPDRS scores, and relatives’ BDI, pain and fatigue levels, a negative correlation was found between SF-36 component and SF-36 physical component scores in these groups. Conclusions: Decreasing QoL significantly, IPD is a disorder affecting considerably both patients and their relatives’ lives and not only patients but also their relatives are influenced from the condition on a large scale. As the disease progresses, the influence becomes defined and an increase is seen in clinical findings while a decrease is witnessed in QoL of IPD patients and their relatives. Keywords: Parkinson’s disease, load on patients’ relatives, quality of life, depression. DOI: 10.5798/dicletip.410262 Yazışma Adresi / Correspondence: Faruk Ömer Odabaş, University of Health Sciences, Konya Health Application and research center, Department of Neurology, Konya, Turkey, e-mail: 201 Odabaş F.Ö.,Uca A.U. Parkinson Hastalarına Bakım Veren Bireylerde Yaşam Kalitesinin Değerlendirilmesi Öz Amaç: Parkinson hastalarına bakım veren bireylerde yaşam kalitesinin değerlendirilmesi. Yöntemler: Vaka grubuna 60 idiopatik parkinson hastası ( İPH ) ile 60 bakım veren birey ve kontrol grubuna 50 sağlıklı birey dahil edildi. Hasta grubunda Birleşik Parkinson Hastalığı Derecelendirme Ölçeği (The Unified Parkinson's Disease Rating Scale –UPDRS ) skorları ve Hoehn-Yahr evreleri (HYE) belirlendi. İPH‘larına bakım verenlerin ve kontrol grubunun depresyon düzeyleri Beck Depresyon Ölçeği (BDİ) ile, ağrı ve yorgunluk düzeyleri Vizüel Analog Skala (VAS) ile, yaşam kaliteleri shorth form-36 (SF-36) ile değerlendirildi. Bulgular: İPH’ na bakım veren grup ile kontrol grubu karşılaştırıldığında; ağrı, yorgunluk, depresyon düzeyleri, SF-36 fiziksel ve mental kompanent skorları arasında istatistiksel olarak anlamlı fark bulundu. Hasta grubunda UPDRS skorları ile bakım verenlerin BDİ, ağrı ve yorgunluk düzeyleri ile pozitif yönde korelasyon, SF-36 mental kompanent skoru ve SF-36 fiziksel kompanent skoru ile negatif yönde korelasyon tespit edildi. Sonuç: İPH; hasta ve bakım verenlerin hayatını önemli ölçüde etkileyen ve yaşam kalitesini anlamlı düzeyde düşüren bir hastalıktır. Hastalıktan sadece hastalar değil hasta yakınları ve bakım veren bireyler de önemli düzeyde etkilenmektedir. Bu etkilenme hastalığın ilerlemesi, klinik bulguların artışı ile belirginleşmekte ve hem hastalarda hem de bu hastalara bakım veren bireylerde yaşam kalitesini düşürmektedir. Anahtar kelimeler: Parkinson hastalığı, bakım veren yükü, depresyon, yaşam kalitesi. INTRODUCTION Among neurodegenarative disorders, Parkinson’s disease (IPD) is the second most commonly encountered disease after Alzheimer’s1. Average onset of IPD ranges between 60-80. The condition affects nearly 1% of general population over 65 years of age and average period between the times of diagnosis and death is some 15 years2. IPD is characterized by such motor symptoms as bradykinesia, rigidity, tremor and postural instability3. Although motor symptoms of IPD are superior to clinical spectrum, most patients with IPD have also other complaints referred to as non-motor symptoms4. These non-motor symptoms are the complaints including exhaustion, depression, anxiety, decrease in cognitive capacity, sleep disorders or insomnia, constipation, bladder disfunction, other autonomic disorders (sexual, gastrointestinal) and emotional disorders5,6. In limited number of studies performed it was suggested that psycho-social and economic burden on relatives caring for patients with chronical diseases like IPD is too much and getting higher and higher over time and health status of relatives and the difficulties encountered by relatives be taken into accountduring the diagnosis and in choosing the most appropriate therapeutic options, and if necessary, preventive approaches be considered7,8. In the present study, we aimed at determining the levels of depression, exhaustion, pain and quality of life (QoL) in relatives taking care of patients with IPD, investigating the association of IPD with itsclinical severity and comparing relatives’ findings with those of healthy controls. METHODS Sixty patients with the diagnostic criteria for IPD3 and 60 relatives taking care of these IPD patiens constituted our study group, while 50 healthy individuals were included into the control group.Patients with systemic and romatological diseases at a level to affect daily 202 Dicle Tıp Dergisi / Dicle Medical Journal (2018) 45 (2) : 201-208 Qo, such as ankylosing spondylitis or rheumatoid arthritis, those with the history of major psychiatric disorders, taking antidepressants or anxiolytic drugs, cognitive deficiency, and IPD patients and their relatives not cooperating with the study tests were exclded out of the study. An approval was obtained from the local ethical board. Patients with IPD and their relatives were informed on the study design, and written consent was obtained from all study participants. The Unified Parkinson's Disease Rating Scale (UPDRS) scores and the Hoehn-Yahr Scale (HYS) stages were determined in patients with IPD. Depression levels of the relatives and the controls were detected through the Beck’s Depression Inventory (BDI), while the pain and exhaustion levels were evaluated via the Visual Analogue Scale (VAS) and the shorth form-36 (SF-36). The Unified Parkinson's Disease Rating Scale The Unified Parkinson's Disease Rating Scale, abbreviated as UPDRS, is a scoring system most widely used for the clinical ev (...truncated)