Rev. Latino-Am. Enfermagem
2012 Mar.-Apr.;20(2):384-91 www.eerp.usp.br/rlae

Original Article

Quality of life of a person with Parkinson’s disease and the relationship between the time of evolution and the severity of the disease

Fabiana Magalhães Navarro-Peternella1 Sonia Silva Marcon2

Parkinson’s disease can cause disability and decrease the quality of life in its sufferers. The aim of this study was to evaluate the quality of life of a group of people with Parkinson’s disease and whether a relationship exists between time of evolution and severity of the disease. Secondary analysis was carried out on transversal data collected from 40 individuals with Parkinson’s disease registered in the Parkinson’s Association of Maringá, in MaringáPR-Brazil. Measures: three instruments were applied: a socio-demographic questionnaire, the Hoenh and Yahr Scale and the Parkinson’s Disease Questionnaire (PDQ-39). According to PDQ-39, men referred to a lower quality of life, although, statistically, there was no significant difference between the two genders. Differences were only observed in the dimensions of “activities of daily living” and “social support”, in which men presented higher impairment, and “emotions” and “bodily discomfort”, where women showed higher impairment. Furthermore, severity of disease tended to lead to a perception of lower quality of life regarding the dimensions of “activities of daily living” and “cognition”, which is relevant to improve clinical guidance and intervention. Descriptors: Parkinson’s Disease; Chronic Disease; Quality of Life.

1 2

MSc, Unidade de Ensino Superior Ingá, Universidade de Maringá, Brazil. Free lecturer, Associate Professor, Centro de Ciências da Saúde, Universidade Estadual de Maringá, Brazil.

Corresponding Author: Fabiana Magalhães Navarro-Peternella Av. Colombo, 9727, km 130 Jardim Industrial CEP: 87070-810, Maringá, PR, Brasil E-mail: navarrofabiana@gmail.com

385 Qualidade de vida de indivíduos com Parkinson e sua relação com tempo de evolução e gravidade da doença
A doença de Parkinson pode ser incapacitante e prejudicar a qualidade de vida de seus portadores. O objetivo do estudo foi avaliar a qualidade de vida de indivíduos com Parkinson e identificar relações com o tempo de evolução e gravidade da doença. Os dados foram coletados na cidade de Maringá, PR, Brasil, com 40 indivíduos cadastrados na Associação Maringaense de Parkinson, por meio da aplicação de três instrumentos: questionário sociodemográfico, escala de Hoenh e Yahr e PDQ-39. De acordo com o PDQ-39, os homens referiram pior qualidade de vida, embora sem diferenças estatísticas entre os sexos. Diferenças foram observadas apenas na dimensão “atividades de vida diária” e “apoio social”, com os homens apresentando maior acometimento e “bem-estar emocional” e “desconforto corporal”, com maior comprometimento entre as mulheres. Por outro lado, a gravidade da doença apresentou tendência a pior percepção na qualidade de vida nas dimensões atividades de vida diária e cognição, pontos relevantes para melhor orientação clínica e intervenção. Descritores: Doença de Parkinson; Doença Crônica; Qualidade de Vida.

Calidad de vida de las personas con enfermedad de Parkinson y su relación con la evolución en el tiempo y la gravedad de la enfermedad
La enfermedad de Parkinson puede llegar a ser incapacitante y afectar a la calidad de vida de los pacientes. El objetivo de este estudio fue evaluar la calidad de vida de las personas con Parkinson e identificar las relaciones con el transcurso del tiempo y la gravedad de la enfermedad. Los datos fueron recogidos en la ciudad de Maringá-PRBrasil, con 40 personas indexadas en la “Associação Maringaense de Parkinson”, a través de la aplicación de tres instrumentos: cuestionario sociodemográfico, escala de Hoenh e Yahr y PDQ-39. De acuerdo con el PDQ-39, los hombres reportaron peor calidad de vida, aunque no hubo diferencias estadísticas entre los sexos. Las diferencias apenas se observaron en la dimensión “actividades de vida diaria” y “apoyo social”, con los hombres presentando una mayor participación y “bienestar emocional” e “incomodidad física” con una más grave entre las mujeres. Por otra parte, la gravedad de la enfermedad mostró una tendencia a empeorar la percepción en la calidad de vida en las dimensiones de las actividades de la vida diaria y cognición, puntos importantes para una mejor orientación e intervención clínica. Descriptores: Enfermedad de Parkinson; Enfermedad Cronica; Calidad de Vida.

Introduction
Parkinson’s disease (PD) is the second most prevalent neurodegenerative disease among the elderly, affecting 1 to 3% of this population
(1-2)

related to the quality of life(4). This takes place because the evolution of the disease causes an increase in limitations to perform activities of daily living (ADL)(1,5) combined with the appearance of cognitive dysfunction and bodily disorders, increasing the impact on the QoL, and including physical, psychological, emotional, social and economic aspects(2,6-7). Individuals with a chronic illness, such as Parkinson’s disease, must deal with physical discomfort as well as loss of social relationships, financial activities, work and leisure(8).

. In Brazil, a study
(3)

conducted in the state of Minas Gerais found that 3.3% of individuals over 65 years of age presented PD . Due to its progressive and chronic characteristics, the disease affects the quality of life (QoL) of patients. At the onset of the disease, the physical dimensions seem to be the most affected, since, initially, there are motor symptoms. However, as the disease progresses, there is a development of alterations involving other dimensions www.eerp.usp.br/rlae 386

Rev. Latino-Am. Enfermagem 2012 Mar.-Apr.;20(2):384-91. Health related quality of life in patients with Professionals, free speech therapy and physiotherapy is offered, along with other physical activities. Currently, the association has 50 PD patients enrolled, 40 of whom live in Maringá and the others in neighboring cities. The inclusion criteria defined for this study were: to be a PD patient, enrolled in PAM and living in Maringá. The exclusion criterion was: to present another neurodegenerative related disease (dementia, neuropathies, among others). None of the individuals living in Maringá presented neurodegenerative related complications cognitive that disease and, therefore, all 40 were included in the study. The study participants were evaluated individually, using three instruments: 1) a socio-demographic questionnaire, to collect data such as gender, age, ethnology, marital status, education level, time since diagnosis, disease progression time, current symptoms, presence of comorbities, and medication used for the treatment of PD, classified as dopamine, dopamine plus another anti-Parkinson drug and an anti-Parkinson drug only. 2) the Hoenh and Yahr(14) Scale, which measures the severity of the disease according to the signs and symptoms presented. The researcher applies this scale from the observation of the eight stage clinical picture: 0 (zero) for no sign of the disease; 1 for unilateral disease only; 1.5 for unilateral and axial impairment; 2 for bilateral disease, without impairment of equilibrium; 2.5 for bilateral disease with mild impairment of equilibrium; 3 for bilateral disease with mild and moderate impairment of equilibrium; 4 for severe disability, though capable of standing and walking without help and 5 for individuals in a wheelchair or confined to bed, in need of full help. For this study, the stages were grouped into three levels of impairment, defined as mild (0–2.0), moderate (2.5– 3.0) and severe (3.0–4.0)(15). 3) PDQ-39 (Parkinson’s Disease Quality of Life Questionnaire) which is a specific questionnaire to measure the perception of quality of life of individuals with PD(16). It contains 39 questions divided into eight dimensions: mobility, activities of daily living, emotions, stigma, social support, cognition, communication and bodily discomfort. The questions refer to the frequency in which individuals have encountered difficult situations during the previous month, which is graded, by the interviewee, with scores from 0 (never) to 4 (always). The overall score value or that of each dimension was obtained by using the following calculation:

Parkinson´s disease is of key importance as new biopsychosocial models of medicine are adopted(9). The majority of PD studies focus on physical impairment and medication effects, aiming to obtain subsidies to improve the planning of therapeutic interventions directed toward these individuals(7,10), considering that the aim of therapy in patients with incurable chronic disorders, such as Parkinson´s disease, is to improve their quality of life However, include
(11)

. anxiety, impairment

neuropsychiatric

depression,

and psychosis are very common(12).

All these factors

influence the quality of life of the PD patient, so that they have an individual perception of their real chronic health condition and how it impacts on their quality of life(13). Therefore, the length time living with the disease may or may not predict the degree of impairment in the quality of life of the PD patient. It is important to identify those factors that most influence the quality of life of the PD patient, considering that these issues may not be evident upon clinical examination, not being part of the more common motor symptoms(9). Therefore, investigating the quality of life becomes crucial in order to understand the course of the disease and to seek strategies to promote the physical and psychic well-being of these individuals, thus improving the planning of therapeutic intervention directed toward them. Understanding these factors contributes to the knowledge and increases the commitment to quality of life which can better target the practice of nursing and of other professionals who work directly with patients and their families. Considering the above, this study aimed to evaluate the quality of life of individuals with PD and to identify whether a relationship exists between time of evolution and the disease severity.

Method
Data were collected from March to June of 2008, in the city of Maringá – Paraná – Brazil, with Parkinson patients enrolled at the Parkinson’s Association of Maringá (PAM). This association is a civil, non-profit institution, created in 2004, the aim of which is to bring together and offer support to PD patients and their families. Monthly talks are given by Health

sum of scores of each question within the dimension 4 (maximum score per question) X nº of questions within the dimension

X 100

www.eerp.usp.br/rlae

Navarro-Peternella FM, Marcon SS. The score is a value from 0 to 100%, with the higher final score equating to the individual having a lower perception of his/her quality of life(5). Data were organized in an Excel 2003 spreadsheet and analyzed using SPSS (Statistical Package for the Social Sciences), version 13.0 for Windows. According to the Kolmogorov-Smirnov test, all the variables presented normal distribution, except for the Hohen and Yahr Scale and the social support dimension of the PDQ39. For the evaluation of the hypothesis of difference among groups, the Student’s t test was used for the normally distributed variables, in order to compare the two independent groups and the ANOVA, following Bonferroni’s ad hoc test for multiple comparisons. However, for the variables that did not present normal distribution, the Mann-Whitney test was used in order to compare two independent groups, using p