Quality of life in patients with Parkinson's disease

We evaluated the quality of life (QoL) in 278 Indian patients with Parkinson's disease (PD) using PDQL questionnaire, with measures various aspects of health status in PD patients including parkinsonian symptoms, systemic symptoms, social and emotional functions. Apart from demographic and treatment details parkinsonian disability and stage was assessed by Hoehn and Yahr stage, Schwab and England scale and UPDRS scores. We conclude that female gender, presence of depression, low degree of independence, higher levodopa dose (>400 mg/day) and higher UPDRS activity of daily living score have the most detrimental impact on QoL in patients with Parkinson's disease. Depression was the most significant factor impairing the QoL and it needs to be treated.     

Quality of life in Polish patients with long-lasting Parkinson's disease.

The objective of this study was to evaluate possible relationships between quality of life (QoL) of Polish patients with long-lasting Parkinson's disease and various demographic and clinical factors. The study comprised 141 patients of Movement Disorders outpatient clinics in Warsaw and Gdansk with at least 5 years of the disease duration. Mean age of patients was 68.09 +/- 8.51 years, mean duration of disease was 11.87 +/- 5.14 years. To assess the quality of life, the Parkinson's Disease Questionnaire (PDQ-39) was used. Additional questions concerned duration of disease, initial and current treatment and expenses associated with therapy. Self-perceived symptoms of depression were in our study the most important factor determining QoL. Duration of the disease and expenses related to the treatment also have a significant impact on the QoL. Patient's age and presence of dyskinesia seem to be irrelevant to the quality of life.     

Quality of life measurements in patients with Parkinson's disease: A community-based study

The objective of this paper is to evaluate the health-related quality of life in a community-based population of patients with Parkinson's disease (PD). The PD population consisted of 233 patients and was derived from a wider prevalence study in the county of Rogaland, Norway. The quality of life was measured by the Nottingham Health Profile (NHP) and four general health and well-being questions. The results were compared with quality of life measurements in 100 patients with diabetes mellitus (DM) and 100 healthy elderly people. The control groups had the same age and sex distribution as the patients with PD. This study showed that PD has a substantial impact on the health-related quality of life. Patients with PD had higher distress scores in all measured dimensions of the NHP than the two control groups. The negative impact of PD was highest for physical mobility, emotional reactions, social isolation and energy. Correlation analysis of the quality of life showed that age, duration of levodopa therapy, higher levodopa doses, depression, cognitive impairment and more advanced disease correlated with higher distress scores in patients with PD. The results of this study showed that PD had a broad impact on well-being, more so than DM. The distress related to the severity of the disease, as well as to depressive symptoms and cognitive impairment. An important finding was the underestimated distress related to lack of energy.     

Validation of a swallowing disturbance questionnaire for detecting dysphagia in patients with Parkinson's disease.

Underreporting of swallowing disturbances by Parkinson's disease (PD) patients may lead to delay in diagnosis and treatment, alerting the physician to an existing dysphagia only after the first episode of aspiration pneumonia. We developed and validated a swallowing disturbance questionnaire (SDQ) for PD patients and compared its findings to an objective assessment. Fifty-seven PD patients (mean age 69 +/- 10 years) participated in this study. Each patient was queried about experiencing swallowing disturbances and asked to complete a self-reported 15-item "yes/no" questionnaire on swallowing disturbances (24 replied "no"). All study patients underwent a physical/clinical swallowing evaluation by a speech pathologist and an otolaryngologist. The 33 patients who complained of swallowing disturbances also underwent fiberoptic endoscopyic evaluation of swallowing (FEES). According to the ROC test, the "optimal" score (where the sensitivity and specificity curves cross) is 11 (sensitivity 80.5%, specificity 81.3%). Using the SDQ questionnaire substantially reduced Type I errors (specifically, an existing swallowing problem missed by the selected cutoff point). On the basis of the SDQ assessment alone, 12 of the 24 (50%) noncomplaining patients would have been referred to further evaluation that they otherwise would not have undergone. The SDQ emerged as a validated tool to detect early dysphagia in PD patients.     

Quality of life and related concepts in Parkinson's disease: a systematic review.

Several studies have investigated the quality of life (QOL) of patients with Parkinson's disease (PD). The purpose of this study was to review the conceptual and methodological quality of quality of life (QOL) studies among patients with PD and to identify factors associated with poor (HR)QOL. Computerized bibliographic databases were screened for publications from 1960 to January 2007. According to a list of predefined criteria, the methodological quality of the 61 studies, was moderate. The term 'QOL' was often used inappropriately. In fact, almost all studies in this review actually assessed health status (HS) instead of QOL. The functioning of patients with PD on physical, social, and emotional domains is affected by PD. Their HS seems to be lower when compared to healthy persons or patients with other chronic diseases. HS studies augment the insight in self-perceived functioning. Therefore, HS is conceived as a valuable construct. However, QOL is also an important factor in health care. Attention towards QOL is needed in order to draw valid conclusions regarding a person's subjective experience of well-being in a broad sense. In order to accomplish this, future studies should apply the QOL concept with more rigor, should use an adequate operational definition, and should employ sound measures.     

Quality of sexual life in Parkinson's disease

Ninety-one consecutive patients with Parkinson's disease (PD) were asked to grade their general satisfaction from life (GSL) and completed the PDQ-39 and the quality of sexual life questionnaire (QoSL-Q). The reliability of the QoSL-Q was 0.74. Satisfaction from sexual life as reflected by the QoSL-Q significantly decreased with aging (P<0.01) and advanced disease (P<0.05). No correlation was found between the PDQ-39 and the QoSL index. The correlation between the PDQ-39 and GSL (r=-0.334) improved by adding the QoSL-Q, as a 9th dimension to the PDQ-39 (r=-0.405). The QoSL-Q is a reliable tool assessed a unique and important dimension not evaluated by the PDQ-39.     

Increased daytime sleepiness in Parkinson's disease: a questionnaire survey.

We evaluated the frequency and severity of excessive daytime sleepiness in an outpatient population with Parkinson's disease in comparison to age-matched controls and examined its relationship with antiparkinsonian drug therapy and sleep history. Increased daytime sleepiness and involuntary sleep episodes have been described in Parkinson's disease, but the etiology is not completely understood. The Epworth Sleepiness Scale (ESS), a validated questionnaire for daytime sleepiness, was prospectively administered to 99 consecutive outpatients with Parkinson's disease and 44 age-matched controls. In addition, a short sleep-screening questionnaire was used. The ESS revealed significantly increased daytime sleepiness in PD patients compared to controls (7.5 +/- 4.6 vs. 5.8 +/- 3.0, P = 0.013). The ESS score was abnormally high (10 or more) in 33 % of PD patients and 11.4% of controls (P = 0.001). ESS was not different between PD patients on levodopa monotherapy and those on levodopa and dopamine agonists, or between patients taking ergoline or non-ergoline dopamine agonists. In PD patients and in controls, sleepiness was significantly associated with reported heavy snoring. Increased daytime sleepiness is more frequent in patients with PD than in elderly controls. Similar to controls, increased daytime sleepiness in PD patients is correlated with heavy snoring.     

Psychosocial problems in Parkinson's disease: evaluation of a disease-specific questionnaire.

Our objective was to evaluate the BELA-P-k, a questionnaire for measuring psychosocial problems and need for help in Parkinson's disease (PD) patients. The Belastungsfragebogen Parkinson kurzversion (BELA-P-k) was translated from German into Dutch. It consists of 19 items distributed over four subscales: achievement capability/physical symptoms, fear/emotional functioning, social functioning and partner-bonding/family, with a "Bothered by" (Bb) and a "Need for Help" (NfH) score. The BELA-P-k was tested for cultural differences, relevance, and feasibility in a pilot study (n = 10) and compared in a validation study (n = 54) with the Sickness Impact Profile, the COOP/WONCA Functional Health Assessment Charts and the Loneliness Questionnaire. All questionnaires were administered in person at home, in a prescribed order. The BELA-P-k was completed by 64 patients with PD. The internal-consistency reliability coefficients for the total Bb (0.90) and NfH (0.93) scales were excellent. The internal consistency of the subscales exceeded the 0.70 standard except for the "Bothered by partner-bonding/family scale" (0.61). Almost all BELA-P-k subscales correlated highly (P < 0.001) with the corresponding scales of the standard quality-of-life indices. There was no significant relationship between disease severity (Hoehn and Yahr) and the BELA-P-k. We conclude that the BELA-P-k is a relevant, reliable and valid measure for assessing psychosocial problems and need for help of PD patients.     

Quality of life and depression in Parkinson's disease

This paper reviews the literature on health-related quality of life (Hr-QoL) and depressive disorders, and the relationship between them, in patients with Parkinson's disease (PD). PD is associated with reduced Hr-QoL, including motor and non-motor physical consequences of the disease, emotional well-being and social functioning. While this effect is greater in advanced disease stages, there is no close relationship between disease duration and impact on quality of life, and the relationship between clinical rating scales and Hr-QoL scores is only moderate. On the other hand, presence and severity of depression in PD strongly correlates with Hr-QoL scores, and a number of studies have reported depression as the main determinant of poor HR-QoL scores. Despite being the main determinant of poor Hr-QoL and being recognized as an important problem by clinicians, until recently depression in PD has received relatively little attention in research studies. It is known that depression and anxiety occur more frequently in PD than in controls. Depression occurs in a bimodal pattern in PD, with increased rates at the onset and a later peak in advanced disease. Both anxiety and depression can also occur before the first motor symptoms of PD and predate the diagnosis of PD, indicating that these co-morbidities are manifestations of the underlying disease process of PD. Imaging studies have demonstrated abnormalities of dopaminergic, noradrenergic and serotonergic functioning with some correlation with severity of depression. The overall relationship between disease severity and rate of depression (except for off-period related depression) is poor, suggesting that nigrostriatal dysfunction alone is not sufficient to explain depressive symptoms in PD. Other factors are likely to contribute to occurrence and severity of depression in PD, either due to extrastriatal pathology or due to psychological and environmental factors leading to reactive depression. Thus, it is likely that depression in PD is multifactorial. The investigation of depression in PD is complicated by diagnostic difficulties in measuring and diagnosing depression in patients with PD due to the considerable overlap between symptoms of PD and depression. While a number of treatment approaches have been suggested, double-blind randomized controlled trials to demonstrate improvement of depression and overall Hr-QoL in PD are warranted.     

Determinants of quality of life in Brazilian patients with Parkinson's disease.

Our objective was to identify determinants of health-related quality of life (HRQoL) in a cohort of Brazilian patients with Parkinson's disease (PD). Patients were evaluated by means of the Hoehn and Yahr staging (H&Y), Unified Parkinson's Disease Rating Scale (UPDRS), Schwab and England scale (S&E), Mini-Mental State Exam, Geriatric Depression Scale, and Hospital Anxiety and Depression Scale (HADS). HRQol was assessed using the MOS-Short-Form 36 (SF-36), the Parkinson's disease Questionnaire (PDQ-39), and the Scales for Outcomes in Parkinson's Disease-Psychosocial Questionnaire (SCOPA-PS). 144 patients were evaluated (mean age 62 years; 53.5% men; mean duration of illness 6.6 years; median H&Y, 2 (range: 1-4). Mean SCOPA-PS and PDQ-39 Summary Index (SI) were 39.2 and 40.7, respectively. Both, PDQ-39 and SCOPA-PS SIs correlated at a moderate level (r = 0.30-0.50) with H&Y, S&E, total UPDRS, HADS subscales, and SF-36 Physical and Mental Components. PDQ-39 and SCOPA-PS were closely associated (r = 0.73). HRQoL significantly deteriorated as H&Y progressed, as a whole. Mood disturbances, disability, motor complications, and education were independent predictors of HRQoL in the multivariate analysis model. In PD Brazilian patients, HRQoL correlated significantly with diverse measures of severity. Depression showed to be the most consistent determinant of HRQoL, followed by disability, motor complications, and education years. There was a close association between the PDQ-39 and SCOPA-PS summary scores.     

Rasagiline improves quality of life in patients with early Parkinson's disease.

The objective of this study was to determine the effects of rasagiline as monotherapy on quality of life (QOL) in patients with early Parkinson's disease (PD). Rasagiline, a potent, second-generation, irreversible, selective monoamine oxidase B inhibitor improves PD symptoms in patients with early PD. Patients with early untreated PD were randomly assigned to once-daily rasagiline 1 mg/day, rasagiline 2 mg/day, or placebo in a 6-month, double-blind trial (n=404). At the end of 6 months, patients entered the preplanned, active-treatment phase in which those receiving 1 mg/day and 2 mg/day of rasagiline continued on their previously assigned dosages and those receiving placebo switched to rasagiline 2 mg/day, while maintaining blinding to treatment assignments. QOL was measured with the Parkinson's Disease Quality of Life questionnaire (PDQUALIF) at 0, 14, 26, and 52 weeks after randomization. Analysis of the change in PDQUALIF scores from baseline to 6 months showed adjusted treatment effects (with 95% confidence interval) favoring rasagiline over placebo of -2.91 units (-5.19, -0.64, P=0.01) for the 1 mg/day group and -2.74 units (-5.02, -0.45, P=0.02) for the 2 mg/day. Subscore analysis attributed most of this benefit to the self-image/sexuality domain. At 12 months (n=266), with all groups receiving rasagiline for at least 6 months, no significant differences in PDQUALIF scores were seen between groups. Rasagiline improved QOL compared with placebo. This QOL improvement appears to be accounted for primarily by the symptomatic benefit of rasagiline.     

Validation of the freezing of gait questionnaire in patients with Parkinson's disease

To revalidate the Freezing of Gait Questionnaire (FOG‐Q), patients with Parkinson's disease (PD) were randomly assigned to receive rasagiline (1 mg/day) (n = 150), entacapone (200 mg with each dose of levodopa) (n = 150), or placebo (n = 154). Patients were assessed at baseline and after 10 weeks using the FOG‐Q, Unified Parkinson's Disease Rating Scale (UPDRS), Beck Depression Inventory (BDI), and Parkinson's Disease Questionnaire (PDQ‐39). FOG‐Q dimensionality, test–retest reliability, and internal reliability were examined. Convergent and divergent validities were assessed by correlating FOG‐Q with UPDRS, BDI, and PDQ‐39. Comparisons between FOG‐Q item 3 and UPDRS item 14 were also made. Principal component analysis indicated that FOG‐Q measures a single dimension. Test–retest reliability and internal reliability of FOG‐Q score was high. FOG‐Q was best correlated to items of the UPDRS relating to walking, general motor issues, and mobility. Correlations between baseline and endpoint suggested that FOG‐Q item 3 is at least as reliable as UPDRS item 14. At baseline, 85.9% of patients were identified as “Freezers” using FOG‐Q item 3 (≥1) and 44.1% using UPDRS item 14 (≥1) (P < 0.001). FOG‐Q was a reliable tool for the assessment of treatment intervention. FOG‐Q item 3 was effective as a screening question for the presence of FOG. © 2007 Movement Disorder Society     

Quality of life and pain in Parkinson's disease: a controlled cross-sectional study

PURPOSE: To compare health-related quality of life (HRQL) and pain symptoms in patients with PD with a matched control group. To our knowledge, controlled studies of Parkinson's disease (PD) patients within this area are rare. SCOPE: Fifty-seven patients and 95 controls took part in a self-administered questionnaire study. The instruments were the SF-36, visual analogue scales, pain drawing and pain-specific questions. CONCLUSIONS: Pain problems are common in PD patients but also to a large extent in the normal population. HRQL was reduced (p < or = 0.001) for the PD patients on all the scales on the SF-36 and consequently also in the pain dimension. The study indicates that even PD patients, who are optimally diagnosed and treated by a neurologist, might require additional rehabilitation treatment to improve their HRQL and pain problems.     

Predictors of punding in Parkinson's disease: results from a questionnaire survey.

Dopamine replacement therapy (DRT) for Parkinson's disease (PD) has recently been linked to the development of a number of nonmotor behavioral control problems. Punding, one of these nonmotor problems, is a term used to describe complex, purposeless stereotyped behaviors such as the repetitive handling or sorting of objects. A self-report questionnaire was adapted to assess punding in the context of dysfunctional hobby-related activities. We report the results of a survey of PD outpatients from a PD research clinic (n = 141) and non-PD controls (n = 103); conducted to identify clinical and psychological factors predictive of punding behaviors. The PD group reported hobbies and activities, which scored significantly higher on the Punding Scale than controls. Higher impulsivity, poorer disease-related quality of life, younger age of disease onset, and concomitant daily medication dosage from dopamine receptor agonists were independently predictive of higher Punding Scale scores in the PD group. These findings are similar to those seen in dopamine dysregulation syndrome, and provide further evidence for the role of impulsivity and age at disease onset in DRT-related nonmotor behavioral problems in PD.     

Pallidotomy and quality of life in patients with Parkinson's disease: an early study.

The purpose of this study was to analyze the effect of stereotactic neurophysiologically guided pallidotomy on health-related quality of life (QoL) of patients with Parkinson's disease (PD). Eleven patients with PD (seven men, four women; mean age, 57.2 years; mean duration of disease, 14 years) with motor complications refractory to medical therapy underwent unilateral pallidotomy. Clinical assessment was carried out a week before surgery and 4 months after the surgical procedure and was based on the Core Assessment Program for Intracerebral Transplantations protocol. QoL was measured by means of the PDQ-39. A set of rating scales (Hoehn & Yahr, Unified Parkinson's Disease Rating Scale, Schwab and England, Northwestern University Disability Scale of Walking, Abnormal Involuntary Movement Scale), timed tests, and self-evaluations of motor function and mood were applied. Improvement was found in dyskinesias (74%) and off-period disability (42%). Cardinal motor signs improved significantly (30%-59%). Four dimensions of the PDQ-39 (Mobility, ADL, Emotions, Bodily Pain) showed a significant improvement (p <0.01-0.001). The global effect on QoL, measured through the PDQ-39 Summary Index (35.3%; 95% confidence interval: 15.60-54.97), was also significant (p<0.01) but unrelated to major clinical changes. Pallidotomy significantly improves QoL in patients with advanced PD. QoL measurement provides relevant information that is probably not attainable by clinical assessment.     

Quality of life outcomes following surgical treatment of Parkinson's disease.

We assessed the impact of surgical treatment of Parkinson's disease on quality of life using generic quality of life instruments and utility scores. The Medical Outcomes Study short form health survey SF-36 and Parkinson's Disease Questionnaire PDQ-39 were used before and 3-6 months after surgery to assess quality of life, and the results were converted into utility valuations. Ninety-seven patients were studied; 33 underwent unilateral thalamotomy, 33 unilateral pallidotomy, 20 bilateral pallidotomy, six subthalamic nucleus (STN) lesions, four mixed lesions, and in one case bilateral STN stimulation. All dimensions of the SF-36 except role mental and mental health showed statistically significant improvement following surgery. The PDQ-39 recorded significant improvements in the mobility, stigma, and bodily discomfort dimensions. The rating scale and time trade-off scales showed statistically significant gains in utility of 8% and 3%, respectively. Gains were particularly marked in the bilateral pallidotomy group. Differences in patient characteristics and selection made direct comparisons between procedures unreliable. Quality of life in patients with advanced Parkinson's disease is amenable to measurement; such measurement provides tentative evidence of significant gains in quality of life following some neurosurgical procedures.