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Parkinson's

Everyday technology use among people with Parkinson’s disease

ORCID Icon, ORCID Icon & ORCID Icon
Pages 2430-2437 | Received 16 Dec 2022, Accepted 03 Apr 2023, Published online: 04 May 2023

Abstract

Objectives

To explore the relevance of and ability to use everyday technology (ET) among people with Parkinson’s Disease (PD) and to explore associations between ET use and global cognition and motor ability.

Materials and Methods

Cross-sectional data was collected from 34 people with PD using the Short Everyday Technology Use Questionnaire+ (S-ETUQ+), the Movement Disorder Society-Unified Parkinson’s Disease Rating Scale and the Montreal Cognitive Assessment (MoCA).

Results

Out of 41 ETs in the S-ETUQ+, the mean number perceived as relevant was 27.5 (min-max 19–35, SD 3.6). A good ability to use ET was reported where many ETs had a challenge measure below participants’ ability to use them. A strong positive correlation between the ability to use ET and global cognition (MoCA) (r = .676, p = <0.01) was shown.

Conclusions

ET use has become integrated into everyday life and is important for participation. This study showed a high relevance of and good ability to use ET and a correlation between ET use and global cognition among people with mild-moderate PD. Evaluation and support to use ET in PD are important for maintaining independence and participation, especially among those with cognitive decline.

Introduction

The use of everyday technology has become incorporated into daily life at home and in society and influences most of what we do (Larsson-Lund & Nyman, Citation2020). Everyday technology (ET) includes a broad spectrum of technical products and functions such as smartphones, household electronics, digital calendars, automatic ticket machines and bank ID, all intertwined with activities of daily living (Kottorp & Nygård, Citation2011; Nygård & Starkhammar, Citation2007). Nowadays, ET use is essential for participation in daily activities at home and in society, for example for shopping, social contacts and events and for travelling (Schmidt & Wahl, Citation2019). Also, within health care, e-health-based technologies, such as digital time booking and online visits, are becoming rapidly integrated (Kampmeijer et al., Citation2016; LaMonica et al., Citation2017). ET is continually being updated, and new technologies developed, which places a demand on the individual to acquire new knowledge to keep up to date (Yagil et al., Citation2016). During the Covid-19 pandemic, the use of the Internet and other digital services increased, according to a Swedish survey, 94% of the total population used the Internet almost daily during 2021 and 2022 (Internetstiftelsen, Citation2022). Technological functions such as sending and receiving e-mail, use of social media and networks, search for information and health-related information and use of bank services were the most used in the Swedish population during 2022 (SCB, Citation2022). Age is the factor most affecting the use of e-services, but even though there has been an increase in use among the elderly population, 23% of those aged 75 − 85 years reported having never used the Internet (Statistics & Sweden, Citation2020).

Studies among older adults report a relationship between decreased cognitive ability and a lower perceived ability to use ET (Malinowsky et al., Citation2017; Nygård et al., Citation2012). Such difficulties using ET can lead to limitations in daily activities and in turn, negatively impact independence, participation (Yagil et al., Citation2016) and health (Larsson-Lund & Nyman, Citation2020). However, since the ability to use ET is affected, not only by age but also by aspects such as interest, motivation and habits, a person with a high motivation to use ET but a low cognitive ability may have a higher ability to use ET than a non-motivated person with no cognitive impairment (Nygård et al., Citation2015). The ability to use technology is also influenced by motor capacity (Yagil et al., Citation2016), which increases the potential difficulty for people living with neurological conditions such as Parkinson’s disease (PD). As disease prevalence increases with age, PD is now the fastest-growing neurological disorder on a global scale (Group & G. B. D. N. D. C, 2017). PD symptoms can be both motor (e.g. Bradykinesia, tremor, postural instability) and non-motor (e.g. Cognitive impairment, fatigue, depression, sleep disturbance) in nature, and have wide-reaching and negative effects on the performance of daily activities (Jankovic, Citation2008).

Additionally, the prevalence of cognitive impairment increases in line with PD progression (Bailey & Goldman, Citation2017; Monastero et al., Citation2018), where cognitive impairment has been shown to have a larger negative impact on the perceived ability to perform activities of daily living and on participation in society than motor impairments (Wang et al., Citation2019).

The literature is sparse regarding ET use among people with PD, and an increased knowledge could deepen our understanding of disease complexity and its potential consequences on activity performance and daily living. Moreover, this knowledge could guide the support of ET use to facilitate participation in daily activities and optimize the capacity for patient-centred care for people with PD in an increasingly digitalised society and healthcare landscape. The main aim of this study was to explore how people with PD perceive the relevance of and ability to use ET. The study also aimed to explore the associations between aspects of cognitive and motor ability and the perceived ability to use ET.

Materials and methods

Participants

This observational study was cross-sectional in nature. Participants were recruited from an outpatient neurological rehabilitation clinic from September 2020 to March 2021 using a consecutive sampling process. The clinic has an uptake from the entire capital region enrolling for rehabilitation providing a diversity of PD patients living in the community. All patients enrolled in neurological rehabilitation were offered to join the study if they; (i) had been diagnosed with idiopathic PD grade 1–3 (mild to moderate disease phase) based Hoehn & Yahr scale (Hoehn & Yahr, Citation1967); (ii) were stable in their anti-Parkinson medication for at least three months prior to inclusion; (iii) had no previous dementia diagnosis or were not undergoing memory investigation, and (iv) had no vision and/or hearing loss affecting performance. Participants received verbal and written information about the study prior to inclusion and were informed that their eventual decline to participate would not affect their rehabilitation. Written consent was collected prior to enrolment. Data collection was approved by the Swedish Ethical Review Authority (Dnr: 2020-03655) ().

Figure 1. Process of inclusion of participants to the study.

Flow chart showing participant inclusion into the study, whereby 44 people were eligible and 34 were included.
Figure 1. Process of inclusion of participants to the study.

Data collection

Data collection was conducted by the first author (CJ) at the neurological outpatient rehabilitation clinic. Firstly, socio-demographic data and information concerning PD symptoms, frequency of technology use and interest in technology were collected. Secondly, to capture relevance of and present perceived ability to use ET, data collection was performed using The Short Everyday Technology Use Questionnaire+ (S-ETUQ+) (Kottorp & Nygård, Citation2011). Further, the Movement Disorder Society-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) was used to assess tremor and self-perceived cognitive ability (Goetz et al., 2008). Assessments were performed in the ON phase of medication (1–2 h following intake). The Parkinson’s disease questionnaire (PDQ-39) (Jenkinson et al., Citation1997) was completed by participants prior to clinical assessment. The Montreal Cognitive Assessment (MoCA) was used for screening global cognition (Nasreddine et al., Citation2005) at a separate time. To reduce burden and avoid participant fatigue which can adversely affect the data, the total time for data collection per participant was up to 6 h, dispersed over three sessions.

Outcome measures

The S-ETUQ + was used to collect data concerning relevance and perceived ability to use 41 ETs (Kottorp & Nygård, Citation2011). The S-ETUQ + is an updated and extended version of S-ETUQ in which information and communication technologies have been added (Wallcook et al., Citation2020). ET’s included in the questionnaire are divided into six topic areas: household (e.g. coffee maker, stove), information/communication (e.g. smartphone, tablet), maintenance/repair (lawn mower), accessibility (e.g. door code, elevator), economy and purchasing (e.g. pay by number code, ATM) and travel (e.g. ticket machine, automated check-in) (Kottorp & Nygård, Citation2011). The S-ETUQ + and S-ETUQ are both short versions of the ETUQ, they are all the same instrument but consist of different pre-set ETs (Malinowsky et al., Citation2017). Assessments with S-ETUQ + are performed face-to-face and take about 20 min to complete (Rosenberg et al., Citation2009). First, the person is asked questions about the relevance of each of the ETs in the S-ETUQ+. Relevance is defined as the extent an ET is present in the person’s context and either; (a) has been used; (b) is currently used or (c) is planned to be used by the person. If relevant, the person is asked about the perceived ability to use each ET, based on a five-category rating scale from—the ET is used with no uncertainty/difficulty—the ET is used with some difficulty—the ET is used with obvious difficulty, to—the ET is used only together with someone, or the technology is no longer used (Kottorp & Nygård, Citation2011; Ryd et al., Citation2015). The questionnaire, scoring and validation of the ETUQ for older adults with and without cognitive impairment have been described previously (Kottorp & Nygård, Citation2011; Nygård et al., Citation2012).

Screening of global cognition was performed with the Montreal Cognitive Assessment (MoCA) screening executive functions, short-term memory, visuospatial abilities, attention, concentration and working memory, language and orientation to time and space (Nasreddine et al., Citation2005). MoCA has demonstrated good reliability and validity for detecting mild cognitive impairment and is sensitive to the cognitive abilities affected in PD (Nazem et al., 2009).

Non-motor symptoms and ADL were assessed using part I of the MDS-UPDRS, and tremor was assessed using questions 3.15 (postural tremor of the hands) and 3.16 (kinetic tremor of the hands) (Goetz et al., 2008). Disease-specific health and quality of life were assessed using the Parkinson’s Disease Questionnaire (PDQ-39) (Jenkinson et al., Citation1997). Finally, the participants’ overall functional level and independence in relation to the demands of living in society were assessed using a non-standardized assessment with a four-grade scale (1) independent; (2) minimal assistance or supervision; (3) moderate assistance; (4) maximum assistance (Bartels et al., Citation2020; Ryd et al., Citation2015).

Data analysis

The S-ETUQ + provides information about the number of relevant ETs (out of the 41 ETs) for each participant as well as the level of relevance of each ET. This data is generated by summing up relevant ETs. The S-ETUQ + also provides two linear interval measures on the same continuum of ET use, (1) a person measure of perceived ability to use ET and (2) an item challenge measure for each ET (Nygård et al., Citation2012). These measures are provided from the ordinal raw data from the S-ETUQ+, converted into linear interval measures using a computer application (Winsteps-Rasch, Chicago) of a Rasch rating scale model (Tesio, Citation2003). Participants perceived ability and challenge of each ET are presented in logits, where higher logits represent higher ability and higher challenge, respectively (). To generate more stable measures, the eight ETs used by less than 10 participants were removed from the analysis (Hedman et al., Citation2018). The Rasch analysis of the S-ETUQ + data was based on previously used criteria (Hedman et al., Citation2018). Since only one participant demonstrated misfit, <5%, it was assumed that the generated person measures were valid for further analysis (L Rosenberg et al., Citation2009).

Figure 2. The relationship between participants’ perceived ability to use ET and perceived ET challenge. Each # represents one participant. M = Participants’ mean perceived ability measure (56.21) and the mean perceived challenge level measure of the ETs (50.00).

Right side: Everyday technologies perceived as more challenging higher up, such as airport check-in, or least challenging, lower down, such as phone calls on smartphones. Left side: Participants rated their ability to use technology as high.
Figure 2. The relationship between participants’ perceived ability to use ET and perceived ET challenge. Each # represents one participant. M = Participants’ mean perceived ability measure (56.21) and the mean perceived challenge level measure of the ETs (50.00).

The data was analysed with IBM SPSS Statistics 27. Significance level was set at p < 0.05 in all analyses. S-ETUQ + measures and MoCA scores were normally distributed while PDQ-39 Mobility and MDS-UPDRS kinetic tremor were not. For data with normal distribution, parametric tests were performed. Pearson’s or Spearman’s Rho correlations were used in the correlational analysis, depending on data distribution. Correlation strengths were defined using Cohen’s guidelines (r 0.1–0.3= weak; r 0.3–0.5= moderate and r 0.5–1.0= strong) (Cohen, Citation1988).

Results

Participant characteristics

Thirty-four people participated in the study, with an even distribution of men and women (). Participants reported a variation in the frequency of use and interest in technology. The most common self-reported PD symptoms among the participants were bradykinesia (38%), rigidity (35%), impaired balance (29%), and bradyphrenia (26%).

Table 1. Demographic and clinical characteristics of the study sample, n = 34.

Relevance of everyday technology

Out of 41 possible ETs, the mean number perceived as relevant by participants was 27.5 (min-max 19–35, SD 3.6). Results show that many of the ETs were perceived as relevant by all participants. Each ET was perceived as relevant by a mean of 23 participants (min-max 1–34, SD 9.8) (). ETs such as smartphones and computers and some of their different functions showed high relevance among the participants, ranging between 24–29 participants per ET which was above the mean relevance of 23 participants per ET (Appendix A).

Table 2. The ten everyday technologies perceived as most and least relevant.

Ability to use and the challenge of everyday technologies

The analysis showed that participants in general reported a good ability to use ET, i.e. many of the ETs had a challenge measure below participants’ perceived ability to use them (). Perceived ability to use ET ranged between 50.00–63.00 logits (m (SD); 56 (3.0)). The challenge measure of ETs ranged between 21.97–62.19 logits, (m (SD): 50 (7.9)).

The five ETs with the highest challenge measure were digital cameras, automatic airport check-in, fire alarms, ticket machines (trains) and computers (social media) (). These ETs had a varied number of users, which can be seen in (Appendix A). The five ETs with the lowest challenge measure were elevators, smartphones (to make/receive calls), door codes and signal buttons (bus). Each of these five ETs had a number of users which exceeded the average number of users of each ET, respectively, (n = 23) (Appendix A).

The relationship between cognitive and motor ability and everyday technology use

There was a strong positive correlation between the perceived ability to use ET and global cognition (MoCA) (r = .676, p= <0.01). However, the relationship between the relevance of ET and global cognition was insignificant (r=.263, p= <0.132). No relationship was seen between the perceived ability to use or the relevance of ET and perceived motor function (PDQ-39 Mobility sub-scale) Rs=.042, P= <0.815 and Rs=.095, P= <0.594, respectively. Neither were significant relationships seen between the perceived ability to use or the relevance of ET and kinetic tremor R/L (UPDRS) Rs=.258, P= <0.141 and Rs=-0.054, P= <0.762/Rs=.264, P= <0.131 and Rs=-0.003, P= <0.986.

Discussion

Relevance and perceived ability to use everyday technology

This study aimed to investigate the relevance of and perceived ability to use ET among people with mild to moderate PD, as well as to explore the association between ET use and aspects of cognitive and motor ability. Results showed that the number of ETs perceived as relevant was large and the perceived ability to use ET was good. Furthermore, a strong significant correlation was seen between cognitive ability and perceived ability to use ET. However, no relationship was observed between ET use and tremor or perceived motor ability.

We find to date, no previously published studies that report ET use among people with PD. Considering the increasing use of and dependence of ET to be active and independent in daily activities, addressing this knowledge gap is of great importance. The rapid integration of ET makes participation in daily life and health dependant on the ability to use ET. Identifying and addressing a low perceived ability to use ET could in turn, minimise the risk of exclusion from activities of daily living and social activities. Despite the lack of existing evidence for ET use in PD, findings in the current study can be compared with prior investigations among older adults with varying levels of cognitive impairment. Participants in the current study reported a high level of ET relevance, which is in line with reported results from older adults with no known cognitive impairment in previous studies. The reported relevance of the participants in this study varied, ranging between 19–35 ETs, similar to the variation in relevance in previous studies (Malinowsky et al., Citation2017; Ryd et al., Citation2015). One possible explanation for a lower perceived relevance of ETs might be that some technologies aren’t available or accessible to the person. Another explanation might be that technologies such as smartphones, computers and tablets can be used to perform similar functions, e.g. sending e-mail, information searches and social media and that some participants chose to use only one of these technologies for all functions. Whilst other participants chose to use different technologies for the same functions and thereby have a higher relevance of ETs. Perceived ability to use ET among people with PD without known cognitive impairment in the current study, is in line with that reported by people with subjective cognitive impairment in prior studies (Malinowsky et al., Citation2017), but lower than controls with no known cognitive impairment and higher than that observed among those (Bartels et al., Citation2020; Malinowsky et al., Citation2017; Ryd et al., Citation2015). The ability to use ET has been shown to decrease at the stage of subjective cognitive impairment (Espay et al., Citation2019) and to further decline among those with diagnosed cognitive impairment (Fallahpour et al., Citation2014; Nygård et al., Citation2012). Considering these and previous findings concerning declining ability to use ET with cognitive impairment, and in consideration of the increasing threat of cognitive decline in PD, it is important to assess ET use in this group. The S-ETUQ + is a subjective assessment of the perceived ability to use and relevance of ETs, this is in line with person-centred care to identify difficulty and needs to use certain ET.

Among the participants in this study, 74.5% perceived different levels of cognitive impairment () and 44% of the participants showed values indicating the presence of mild cognitive impairment in an objective assessment with MoCA. A recent study showed that in patients with PD who expressed subjective cognitive complaints at baseline, a third had progressed to PD-MCI or PDD within 7.5 years (Gonzalez-Latapi et al., Citation2021). An assessment of perceived ability to use ET could offset future risk of limitations in performance of daily activities and participation which can occur and be an indication of the further need for cognitive screening. Providing support is important also on an individual level (Larsson-Lund & Nyman, Citation2020). Habits and interests affect the ability to use ET (Malinowsky et al., Citation2017; Rosenberg et al., Citation2009). Where a person’s attitude to, interest in and the extent of use of a technology, e.g. using social media on a smartphone, impact the ability to maintain ability and keep up with changes in ET (Schmidt & Wahl, Citation2019).

No significant relationship between ET use and self-reported motor ability or assessed tremor was observed. Nonetheless, a relationship between observed motor ability and the perceived ability to use ET among people with mild cognitive impairment is previously reported (Ryd et al., Citation2015). Motor symptoms such as tremor, bradykinesia and impaired fine motor skills are common in PD (Armstrong & Okun, Citation2020; Proud et al., Citation2020) and it appears that fine motor skills and disease severity are related to impaired touchscreen use (Nackaerts et al., Citation2020). It is probable that the small sample size and homogeneity in relation to kinetic tremor, and omission of objective assessments such as, for example, dyskinesia or bradykinesia reduced the ability to detect such associations. Another contributing factor could be that participants were in the ON-phase during the assessment and therefore a lower degree of, e.g. tremor was detected. This is however a finding that needs to be explored and further investigation of this potential relationship using a larger sample is therefore required. The objective of the S-ETUQ + is to capture challenges and possibilities to use ET, as opposed to investigating explanatory causes of difficulties using technology. The addition of a complementary activity assessment or, an assessment of observed ability to use ET with, e.g. the Management of Everyday Technology Assessment (META) (Bartels et al., Citation2020) could help identify how difficulties in using technology impact the performance of activities. Such an addition could also clarify potential relationships between the self-perceived and observed ability to use ET.

The use of everyday technology and participation

Use of a computer, tablet, information searches and e-mail all featured among technologies perceived as least relevant among this PD cohort. This finding is of relevance in relation to the increasing reliance on such devices in the performance of daily activities, social contacts (Larsson-Lund & Nyman, Citation2020) and within healthcare (Kampmeijer et al., Citation2016; LaMonica et al., Citation2017). The ability to use technology has become integral in the maintenance of independence in daily activities and for participation where difficulties in technology use may result in exclusion from social and societal activities and events (Rosenberg et al., Citation2009; Schmidt & Wahl, Citation2019). Even though study participants perceived a good ability to use ET, a strong relationship was found between cognitive function and perceived ability to use ET. The use of technology requires competence and flexibility to learn, and as technological hardware and services are updated, difficulties to keep up may lead to avoidance behaviour and result in decreased participation in the activity that the technology facilitates (Yagil et al., Citation2016). Further, a person’s access to technology, interest in ET, and digital competence can create unequal possibilities for individuals and consequently affect participation (Larsson-Lund & Nyman, Citation2020). In consideration of the importance of activity and participation for health, well-being and development (Nilsson & Townsend, Citation2010), our findings regarding the relationship between cognitive ability and ET use, together with the relatively low levels of perceived relevance of common devices supporting daily activities and healthcare, require further investigation in a larger sample.

Furthermore, the use of technology in healthcare can facilitate a more direct communication between patients and healthcare providers and assist patients in making informed decisions (Espay et al., Citation2016; Wallcook et al., Citation2020). Nevertheless, to use technology in everyday life activities and to have adherence to eHealth is greatly dependent on the person’s ability to use the technology, their cognitive capacity, and motivation and interest in the technology or activity and, the possibility of support (Kampmeijer et al., Citation2016; Schmidt & Wahl, Citation2019). Hence, to have a holistic perspective taking the individual’s ability, interest, possibility for support and access to the technology into consideration becomes important. The prescription and application of eHealth methods within healthcare require assessment of the person’s ability to use technology at an individual level (Malinowsky et al., Citation2014). The S-ETUQ + could serve as the assessment of perceived ability to use ET and subsequently the ability to use eHealth. During the Covid-19 pandemic older adults have increased their internet usage through activities such as attending social events, on-line-shopping, banking and healthcare activities and reports show the continued use of digital services following the pandemic (Internetstiftelsen, Citation2022). This provides further argument for the importance of screening for the relevance and perceived ability to use ET. This is to be able to prevent risk of exclusion in daily activities and social contexts and be in line with person-centred care. Also, the importance of providing support on a macro-, micro- and meso-level (Larsson-Lund & Nyman, Citation2020).

Strengths and limitations

The S-ETUQ + is a time-efficient means of capturing perceived relevance and ability to use ET and provides information on already subtle difficulties in using ETs that might affect performance of daily living, independence, and participation (Bartels et al., Citation2020; Patomella et al., Citation2018). Additionally, the S-ETUQ + is shown to be sensitive to cognitive decline, as perceived ability to use ET reduces in line with increasing levels of cognitive impairment (Malinowsky et al., Citation2017; Nygård et al., Citation2012). A further strength of our method involves the use of an in-depth interview-administered questionnaire (S-ETUQ+) which ensures a high construct validity and reduces the possibilities for misinterpretation often occur when internet-administered questionnaires are filled out by larger groups.

Nevertheless, the rapidly evolving technical landscape poses a challenge concerning the long-term relevance of questionnaire items which could have impacted study findings. During data collection, the participants highlighted specific technical services not included in S-ETUQ+, such as mobile payment and digital identification apps. However, since there were less than 10 participants that mentioned these as relevant, data concerning use of these increasingly prevalent digital services are therefore not reflected in the findings. Additionally, when the questionnaire was developed it was less common for one technology, such as a smartphone, to enable the performance of a variety of services. A participant’s current choice to only use a smartphone and not an existing computer for e-mail or social media could generate a lower score of relevance of ETs. On the other hand, the choice to use one ET for different services can occur because only one of the ETs is accessible and relevant or due to difficulties to use other ETs. The S-ETUQ + only generates measures for the ETs found as relevant by the person. Hence, a participant’s choice to only use the smartphone and not an existing computer, i.e. e-mail or social media generates the lowest ability score regardless of whether this is due to difficulty or convenience.

It is possible that a more comprehensive data collection incorporating PD motor symptoms such as dyskinesia, bradykinesia and rigidity could have captured relationships between perceived ability to use ET and PD motor symptoms. The small sample size of 34 participants reduced the possibility to detect moderate or weak correlations between aspects of motor function. Our small sample size and data collection at one site limits the generalizability of our findings to the larger population of people with PD, especially those at more severe disease stages. The non-representation of people at severe stages of disease is unfortunately a very common and widely recognized phenomenon in PD research (Vaswani et al., Citation2020). Since the prevalence of cognitive impairment is higher at the severe stage of PD (Cosgrove et al., Citation2015) it presents additional challenges in collecting patient-reported outcomes. Nonetheless, our sample is reflective of those at mild-moderate stages of PD who actively seek outpatient rehabilitation.

Conclusion

This study showed a high relevance of and good perceived ability to use ET among people with mild-moderate PD. We also report a positive relationship between global cognition and perceived ability to use technology. In consideration that decreased ability to use technology may lead to reduced independence and participation in daily life and in the maintenance of health, our findings concerning associations between cognition and ET use require further validation in a larger representative sample of people with PD. This study also suggests that the S-ETUQ + is valid for use in the evaluation of ability to use ET in individuals with PD.

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Disclosure statement

The authors report no conflict of interest.

Additional information

Funding

This study was supported by The Stockholm Sjukhem Foundation, by NEURO Sweden and the Swedish Parkinson Foundation.

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Appendix A.

Everyday technologies in the S-ETUQ + and the number of participants perceiving them as relevant