Gun-Marie Hariz, Department of Community Medicine and Rehabilitation, Section of Occupational Therapy, Umeå University, 90187 Umeå, Sweden Tel.: +46 70 3644366 Fax: +46 90 7869267 e-mail: email@example.com
Objective – To describe activity of daily living (ADL) and quality of life (QoL) at first visit to a neurological centre, in patients subsequently diagnosed with Parkinson’s disease (PD), according to subtype of disease and compared to healthy controls.
Materials and methods – 99 patients and 31 controls were included. Patients were classified into three groups according to predominant symptoms: 50 Postural instability-gait difficulties (PIGD), 37 tremor dominant, 12 indeterminate. Evaluations included ADL-taxonomy, SF-36, and the Parkinson disease questionnaire (PDQ-39).
Results – Patients experienced early on limitations in ADL and QoL compared to controls. Patients with PIGD subtype had already at first visit a worse status, clinically and in ADL and QoL, than patients with tremor dominant type.
Conclusions – Already at first visit to a neurological centre, patients who will eventually receive the diagnosis of PD exhibited restrictions in ADL and QoL. Patients with axial symptoms were affected most.
Parkinson’s disease (PD) is a chronic and progressive disorder that will gradually affect activities of daily living (ADL), alter the person’s ability to participate in society, and will have negative impact on health-related quality of life (HRQoL) (1, 2). According to the disease’s main motor symptoms and complaints, persons with PD may be classified as having one of the three following subtypes: postural instability and gait difficulty (PIGD) type, tremor dominant (TD), or indeterminate type of disease (IND) (3). During the last years there has been more focus on the non-motor symptoms of the disease, such as sleeping difficulties, pain, sexual disturbances, mood changes and memory deficit, as well as depression and dementia (4). The non-motor features have been attributed a more significant role and their impact on daily life and quality of life is sometimes considered as more restricting and disabling than the motor features (5, 6).
When the person who eventually will be diagnosed with PD first seeks medical advice the complaint may be related to diffuse symptoms such as painful and tender muscles, weak or stiff limbs, fatigue or low mood. Difficulties in chores of daily life such as handwriting, brushing teeth, buttoning clothing or manipulating a spoon may also be mentioned (7). According to Schenkman et al. (8) patients were more likely to consider limitations in ADL as more burdensome compared to impairments.
The preclinical development, timing and sequence of disability in patients newly diagnosed with PD, according to different subtypes of PD, are yet inadequately described. In order to better understand the disease process, to individualize treatment, and to timely and more accurately contribute with suitable rehabilitation strategies and support to patients, families and carers, it is important to gain knowledge early in the disease about the patient’s activity limitations and quality of life in relation to the subtype of PD (2, 9). The aim of this study was thus to describe and compare activities of daily living and health related quality of life in patients newly diagnosed with Parkinson’s disease, according to subtype of disease and in comparison with age-matched healthy controls.
Materials and methods
This study is part of an ongoing longitudinal prospective research project in a community-based population on etiological, diagnostic and clinical aspects of Parkinsonism and Parkinson’s disease. All patients suspected to have parkinsonism or Parkinson’s disease and living in Umeå health care district, which serves a population of 142,000, were referred. For this particular study only patients who subsequently received a diagnosis of PD according to published criteria (10), were included. The diagnosis was carried out independently, by two movement disorder specialists. Out of 125 patients with idiopathic parkinsonism evaluated between February 2004 and September 2007, 26 patients were subsequently excluded at 12 month follow-up for the following reasons: 12 had probable multiple system atrophy, one had essential tremor, two patients had probable progressive supranuclear palsy, five had unclassified parkinsonism but not confirmed PD, three had their follow-up performed elsewhere and three declined follow-up. A total of 99 patients (45 females) with confirmed PD were included together with 31 healthy age-matched control subjects (14 females). At the time for this evaluation, i.e. at first visit to the department of Neurology, the patients were not treated with any anti-Parkinsonian medication. The study was approved by the local ethical committee.
Study design and assessment programme
At their first visit to the neurological department, the patients filled in the following two scales for assessment of quality of life: 1) The Parkinson’s Disease Questionnaire (PDQ-39) (11), covering eight domains (Mobility, Activities of daily living, Emotional well-being, Stigma, Social support, Cognitive impairment, Communication and Bodily discomfort); 2) The generic Short Form health survey (SF-36) (12), which is a measure of function and well-being, comprising eight subscales: Physical function; Role limitations due to physical problems; Role limitations due to emotional problems; Social function; Mental health; Energy/vitality; Pain and general health perception. Additionally, the Unified Parkinson’s disease rating scale (UPDRS) (13), the Hoehn and Yahr disease staging (14), the Schwab and England scale (15) and the Mini Mental State Examination (MMSE) (16) were administered. Based on predominant motor features in UPDRS ADL subscore (part II) and in motor subscore (part III), the disease subtype of each individual patient was classified by the movement disorders neurologists according to a method proposed by Jankovic et al. (3) into tremor dominant (TD), indeterminate (IND) or postural instability and gait difficulty (PIGD) subtype of PD.
The patients were also evaluated using the items of the activity of daily living – taxonomy (ADL-taxonomy) and the Montgomery Åsberg depression scale (MADRS) (17).
The ADL taxonomy is a generic instrument that covers the most common activities of daily living, both personal ADL (P-ADL) and instrumental ADL (I-ADL). It includes 12 different activities dealing with self-care, home maintenance and communication (18, 19). Each activity comprises a sequence of actions that are assumed to be hierarchically organised from the easiest to the more demanding one. The patients rated the actions that they considered relevant for them according to the level of difficulty in performing that action (19) (Fig. 1).
Based on age and sex of the first 50 included patients, 31 age- and sex-matched controls were recruited through advertisement in the local newspaper. They were medically examined to verify absence of neurological disease and other major illnesses, and underwent the same evaluation procedures as the patients.
Descriptive measures are presented as mean values with standard deviation (SD) and range, and for the Hoehn and Yahr staging, in median values with Inter Quartile Range (IQ). Results seen in figures are presented as mean values and standard error (SE). For determining significance of non-parametric unrelated group variables, we used Kruskal–Wallis test. Mann-Whitney test for two non-parametric unrelated variables was carried out for post hoc analysis. For the Hoehn and Yahr staging, significance was determined by chi-square test. A P-value < 0.05 was considered significant.
Demographic and clinical characteristics
Table 1 shows the clinical and demographic characteristics of patients and healthy controls.
Table 1. Demographic and clinical characteristics of 99 untreated patients with parkinsonism, at their first visit to a neurological center, and who subsequently received the diagnosis of Parkinson’s disease [50 with postural instability and gait difficulty (PIGD) type, 37 with tremor dominant (TD) type and 12 with indeterminate (IND) type], and of 31 healthy controls (HC)
PD whole group
PIGD type of PD
TD type of PD
IND type of PD
Mean±SD (range). MMSE= Mini Mental State Examination; UPDRS= Unified Parkinson Disease Rating Scale; MADRS= Montgomery-Åsberg Depression Rating Scale. IQ= Inter Quartile Range. ***PIGD vs TD P < 0.001; **PIGD vs TD P < 0.01; *PIGD vs TD P < 0.05; †PIGD vs IND P < 0.05; ††PIGD vs IND P < 0.013; §§§PIGD vs HC P < 0.001; ‡‡‡TD vs HC P < 0.001; ¶TD vs IND. P < 0.05.
Age at first noted symptoms
67.4 ± 9.9 (39–88)
69.3 ± 9.9 (43–88)
64.9 ± 9.6 (39–78)
67.3 ± 10.2 (52–82)
Age at first visit
69.0 ± 9.8 (39–89)
70.4 ± 10 (43–89)
67.4 ± 9.3 (39–81)
68.3 ± 10.1 (54–82)
67.4 ± 6.6 (48–78)
28.6 ± 1.5 (24–30)
28.4 ± 1.7 (24–30)
28.9 ± 1.15 (27–30)
28.8 ± 1.2 (27–30)
29.8 ± 0.8 (28–30)
Hoehn & Yahr Median (IQ1–IQ3)
Hoehn & Yahr stages (%) patients
Stage 1 (%)
Stage 2 (%)
Stage 3 (%)
Stage 4 (%)
Stage 5 (%)
Schwab & England
88.3 ± 8.2 (60–100)
84.6 ± 9.4 (60–95)***†
92.7 ± 4.9 (85–100)¶
89.6 ± 5.4 (80–95)
UPDRS part I
1.5 ± 1.5 (0–7)
1.8 ± 1.5 (0–7)
1.1 ± 1.1 (0–4)
1.25 ± 1.9 (0–7)
UPDRS part II
8.5 ± 4.1 (2–25)
10.2 ± 4.4 (4–25)***
6.5 ± 2.8 (2–16)
7.3 ± 3.9 (2–14)
UPDRS part III
25.9 ± 11.8 (5–62)
29.3 ± 13.0 (9–62)*
21.9 ± 9.2 (5–48)
23.7 ± 9.8 (9–44)
39.5 ± 15.2 (8–81)
41.6 ± 16.7 (15–81)**
29.3 ± 10.7 (8–52)
32.2 ± 11.5 (12–59)
4.5 ± 4 (0–18)
5.7 ± 3.7 (0–17)††§§§
4.0 ± 4.3 (0–18)‡‡‡
1.9 ± 2,9 (0–10)
0.3 ± 0.5 (0–2)
Groups did not differ in age at baseline assessment, nor in age at first noted symptom, or with respect to sex distribution. There were no demographic differences between females and males in the PIGD group of patients. In the TD group, however, women were 69.5 ± 6.5 years (range: 54–78) and men 61.7 ± 10.1 years (range: 39–78) at the time they observed the first symptom (P = 0.013) (results not shown in table).
Patients with PIGD subtype of PD had significantly worse Hoehn and Yahr stage compared to patients in the TD group.
Patients with TD type valued the impact of PD on daily life according to the Schwab and England scale as being significantly less than patients in the other subgroups. Patients with PIGD type valued themselves as being more dependent in daily activities compared to patients with IND type of disease.
UPDRS ADL score (part II) as well as the UPDRS motor subscale (part III) and the total (part I+II+III) UPDRS score showed all the same pattern, with worse scores for the PIGD group. Depression exhibited higher values in the PIGD group compared to the IND group of patients and to healthy controls. Patients with TD disease also scored higher on the MADRS compared to the healthy controls.
In the IND group men had higher values than women in total UPDRS and in the MADRS (results not shown in table). UPDRS total scores for men were 37.6 ± 9.5 (range: 27–59) and for women 21.5 ± 6.7 (range: 12–27), P =0.008. Mean values according to the MADRS were 0.25 ± 0.5 (range: 0–1) in women and 2.9 ± 3.3 (range: 0–10, P = 0.031) in men. No such differences were found between men and women in the PIGD and TD groups.
Fig. 1 shows details of the results for P-ADL and I-ADL, respectively, in the three subgroups of patients and in healthy subjects. Table 2 shows the levels of significance of the ADL taxonomy results according to the various actions of P- and I-ADL, respectively.
Table 2. Statistics for results of ADL taxonomy displayed in Fig. 1A, B
Fig. 2 shows the profile of PDQ 39 in the three subgroups of patients. The PIGD patients had rated Mobility, ADL and Communication worse than the TD and the IND patients. In addition the PIGD group of patients displayed worse scores on the ‘Bodily comfort’ subscale compared to the TD group. In total, on the PDQ 39 summary index, the PIGD group showed worse outcome than the other groups.
According to results from the SF 36 (Fig. 3 and Table 3), Physical Functioning (PF), Role-Physical (RP), General Health (GH), Vitality (VT), Role-Emotional (RE) and the Physical Component Summary (PCS) score, exhibited worse values in the PIGD group compared to the TD group.
Table 3. Statistics for results of SF-36 displayed in Fig. 3
Subscales of SF 36
PIGD vs TD
PIGD vs IND
TD vs IND
PIGD vs Controls
TD vs Controls
IND vs Controls
SF-36, Short form health survey-36; PIGD, Postural Instability Gait Difficulty; TD, tremor dominant; IND, Indeterminate type of Parkinson’s disease; NS, non-significant. *P <0.05; **P <0.01; ***P < 0.001.
Physical Functioning (PF)***
Bodily Pain (BP) NS
General Health (GH)***
Social Functioning (SF)***
Mental Health (MH)***
Physical Component Summary (PCS) score***
Mental Component Summary (MCS) score***
The healthy controls (HC) showed better health status than patients on all subscales of SF-36 with two exceptions: On the subscore of Pain, there was no difference between HC and any of the three patient groups; On emotional role functioning subscore, HC did not differ from TD or IND groups. The Physical Component Summary (PCS) score and the Mental Component Summary (MCS) score, also showed better outcome for the healthy controls compared to the patients, except for the IND group who did not differ from the Healthy controls with respect to the MCS score (Fig. 3 and Table 3).
The main findings of this longitudinal community-based study were that untreated patients with parkinsonism who subsequently received the diagnosis of PD, experienced at their first visit to a neurological centre decrease in ADL abilities and in their life quality, compared to age-matched healthy subjects. Additionally, within the various subgroups of PD, patients with the PIGD subtype were early on far worse both clinically and in their ADL and QoL, than patients with TD subtype. Finally, another incidental finding was that, in this community-based study, PD was almost equally distributed between men and women.
While the patients and the healthy controls did not differ in age or in cognitive status, patients showed signs of low mood according to the MADRS when compared to the healthy subjects.
Patients with TD type of disease had been aware of symptoms and signs of the disease for a longer duration before seeking medical attention, compared to patients in the PIGD and IND groups. The reason could be that tremor is a more distinct symptom and therefore the time of onset is easier to remember.
Activities of daily living
This study showed significant differences foremost between the PIGD and the TD groups of patients, as well as between the PIGD and the HC groups, with respect to both P- and I-ADL, showing more difficulties for patients with a PIGD type of disease, (Fig. 1A, B and Table 2).
In 50% of the P-ADL actions, patients with PIGD type of disease showed significantly poorer results compared to HC, whereas the TD group only differed in four actions i.e., ‘eating’, ‘cutting food’, ‘writing’ and ‘walk in neighbourhood’ compared to the HC (Fig. 1A and Table 2). In I-ADL there were significant differences in 75% of actions, indicating that in more complex ADL-activities such as home maintenance, shopping and transportation, the differences between patients and HC were more prominent (Fig. 1B and Table 2). These activities are known to involve interaction with others and with the environment (20).
Writing difficulty has been described as a sign of the disease that could be detected before the diagnosis (21). According to an experimental study by Ponsen et al. (22) patients with newly diagnosed and untreated PD, demonstrated impairment in performing tasks such as writing and concluded that this kind of tasks ‘is a very early characteristic of PD’. These results are confirmed in our study by the patients’ own rating of their ability to write.
Mobility in general and particularly gait is affected in PD (23), through the decline of gross motor skills (24) (akinesia) and also the eventual effect of cognitive changes (executive function) (25). Our study shows that in addition to ‘walking in neighbourhood’ also ‘transfer in bed’, and ‘walking stairs’ were the first aspects of mobility (transfer) to be affected at this early stage of disease. The reason that walking outside is affected, but not the ability to move around inside, could be explained by the home environment being more familiar and predictable than walking outside (26).
In a recent clinical experimental study by Doan et al. (27) early PD patients compared to age matched controls showed, despite a unilateral disease, difficulties in performing bilateral reach-to-eat tasks. This was confirmed in our PIGD and TD patients by showing significant differences compared to HC in the actions ‘eating’ and ‘cutting food’.
Among patients with PIGD type of disease the ability to dress and undress is reduced compared to both the TD group and the HC. Dressing is a daily goal-directed activity requiring good balance, bimanual coordination, and both gross and fine motor skills. Difficulties in dressing have been shown to be one important factors impacting on patients’ quality of life (28).
I-ADL consists of more complex and more demanding activities, and a prerequisite for individuals to be able to participate in society. Here too, PIGD patients had more difficulties than the TD group of patients in most I-ADL activities. This is in accordance with the study of Muslimovic et al. (29) who found that axial impairment contributed most to disability in a sample with mild to moderate PD. Furthermore, I-ADL puts further constraints on attentional load, which is considered to be a key constraint to motor performance in PD (30).
Despite the fact that the patients and specifically patients with PIGD type of disease displayed significantly worse scores than healthy subjects on both P- and I-ADL, the impact of PD on daily activities at this early stage of the disease was rather mild, and no action in P or I-ADL reached the level of being effort demanding except ‘pedicuring’ for patients with PIGD and IND type of disease. This action requires balance, coordination and also manual dexterity.
According to Fried et al. (31) this stage of limitation in daily activities may be defined as pre or subclinical state of disability, and according to Lilienfeld & Lilienfeld (32) this preclinical disability is characterized as ‘early functional limitations’ before it is clinically obvious or efficiently hinders daily activities. It may be that some of the early limitations in ADL are surmounted by the use of compensatory strategies implying e.g. adjusted expectations and acceptance of slower or less frequent performance, or redefining roles so that the action is no longer necessary (31). By assessing patients at this early stage of disease it is possible to understand the process leading to activity limitations and disability. This knowledge may guide rehabilitation teams in finding ‘critical’ points, where rehabilitative steps can be used to prevent and delay activity limitations and disability by implementing training programs early on, before the patients reach more advanced disease stages affecting not only movements but also cognition, and thus lose abilities to benefit fully from rehabilitation (33, 34).
Quality of life
In advanced cases of PD many factors may obviously affect QoL, not least treatment related factors such as motor fluctuations (35, 36). Here we show factors of importance of QoL prior to any treatment. On the PDQ 39 summary index, the PIGD group showed worse results than the other groups. ‘Mobility’, ‘ADL’, ‘communication’ and ‘bodily discomfort’ were the aspects where PIGD patients scored worse, which is in agreement with findings by Muslimovic et al. (29) and Schrag et al. (37) in that axial impairment is strongly associated with decrease in QoL. This similarity between our findings and those of the two quoted studies above is the more interesting, since our patients were rated at first visit, after a mean symptom duration of 1.6 year, while the patients of the two referred studies had a mean disease duration of 3.3 and 5.3 years, respectively.
On the SF 36 scale the PIGD group showed worse values compared to the two other subgroups, and compared to HC. The merit of using this non-disease specific QoL scale is that patients can be compared to healthy controls. The largest discrepancy between PIGD patients and HC was in the domain of ‘role physical’ which corroborates the findings of the ADL taxonomy, and reflects the early disability and functional limitations of patients with dominant axial symptoms. The fact that PIGD patients, at this early stage, exhibited also higher values on the MADRS than healthy subjects –although they still did not fulfil criteria for diagnosis of depression– may also have impacted on their quality of life, as described by Schrag et al. (37).
In conclusion, this is the first study to our knowledge, which in an untreated community-based population with Parkinson’s disease, shows that already at first visit to a neurological centre; patients exhibit restrictions in ADL and QoL. Among these patients, those affected most both at the level of activity and of participation, as well as in quality of life, are patients with axial symptoms. These points to the need for an early, individualized, and differentiated rehabilitation program for patients with newly diagnosed PD.
The authors would like to thank Jan Linder and Mona Edström for assistance with data collection. This work was supported by grants from the Swedish Brain foundation, The Swedish Parkinsons’s Disease Foundation, The Swedish Medical Research Council, The University of Umeå, Västerbotten County Council (ALF), King Gustaf V’s and Queen Victoria’s Foundation.