On declaring COVID-19 as a pandemic in March 2020, the World Health Organization advocated strict social distancing and quarantine measures to avoid virus spread [1]. Health services rapidly used telemedicine to deliver care for many conditions, including Parkinson disease [2-6]. Telemedicine is the delivery of health care services, where distance is a critical factor, using information and communication technologies [7].

Parkinson disease is a heterogeneous neurodegenerative condition, affecting >6.1 million people globally, with rates rising [8]. People with Parkinson disease frequently experience cognitive symptoms [9], with impairment increasing with age and duration of disease: 80% of people with Parkinson disease have dementia by 20 years of disease duration [10].

Remote consultations (telephone or video call) are not completely new. Studies have shown feasibility of specialist consultations and delivery of therapy for people with Parkinson disease [11-15], and high rates of interest in telemedicine among people with Parkinson disease have been reported [16,17]. Patient perspectives have tended to be explored within research contexts, a qualitative survey within a US-based trial of Parkinson disease specialist internet-based visits collated feedback from specialist and patient participants [18]. They identified positive and negative perceptions driven by three themes: personal benefits (eg, lack of travel and frustration), perceived quality of care (eg, more frequent visits and technical troubles), and quality of interpersonal engagement (eg, liked the physician and difficult communication). Studies of remote consultations in Parkinson disease have predominantly been undertaken with educated, digitally literate samples, with digital resources provided and technical support available; therefore, little is known about real-life use. A recent study of neurologists’ experiences of remote consultations (not Parkinson disease–specific) found perceived improved access and efficiency and an expectation that telemedicine will continue to be used beyond the pandemic. However, in-person consultations were not felt to be fully replaceable owing to great uncertainty when working remotely, technical and administrative problems, and “difficult consultations.” Consultations reported as “difficult” included those with new patients and those with cognitive impairment and consultations requiring difficult decisions or significant discussions (eg, breaking bad news) [4]. A recent qualitative study exploring the impact of the COVID-19 pandemic on Parkinson disease management, from the perspective of people with Parkinson disease and health care professionals (HCPs), reported mixed reactions to remote consultations [19]. Most study participants were able to use internet-based technologies, which the authors acknowledged may be unrepresentative of the wider older population living with Parkinson disease, and cognitive impairment was not explored.

A qualitative study exploring the experiences of remote consultations for people living with non-Parkinson dementia and their carers identified various difficulties: the lack of prompts to remember problems, dealing with new emerging difficulties, rescheduling or missed calls, and inclusion of the voice of the person with dementia [20]. However, to the best of our knowledge, no studies have investigated remote consultations for people with Parkinson disease who have cognitive impairment. The combination of physical and cognitive impairments and the pattern of cognitive deficits in Parkinson disease differs from other types of dementia [21-24], which may convey different experiences and needs.

This study aimed to explore the experiences of remote consultations for people with Parkinson disease and cognitive impairment and investigate considerations for future service delivery.

An exploratory qualitative design using semistructured interviews, analyzed using thematic analysis, with reporting guided by the Standards for Reporting Qualitative Research framework [25].

This study was approved by the London Queen Square Research Ethics Committee (18/LO/1470).

Overall, three groups of participants were recruited between October 2020 and July 2021: people with Parkinson disease and cognitive impairment, family caregivers, and HCPs working with this group. People with Parkinson disease and caregiver participants were purposively sampled to ensure representation of different clinical and social backgrounds in terms of age, ethnicity, education, living arrangements, duration of disease, and severity of impairments (functional and cognitive) managed through different health care services. Potential participants were identified through clinicians in primary and secondary care, or participants self-presented to the research team following charity sector advertisement. Additional recruitment sites were approached in more ethnically diverse areas to try to improve recruitment from ethnic minorities.

For HCPs, a range of different professional backgrounds was sought, working within different geographical areas and services, with a variety of experience of remote consultations. HCP participants were also identified through snowballing, using professional networks. HCP participants needed adequate experience of working with people with Parkinson disease to recall clinical encounters for discussion, but a range of expertise was sought. To represent the broad range of disciplines involved in the care of people with Parkinson disease [26], greater numbers of HCPs compared with people with Parkinson disease and caregivers were required. All potential participants were screened for eligibility using inclusion and exclusion criteria presented in Textbox 1 and sent detailed information via post or email. All participants provided formal consent, in the form of written, digital, or audio-recorded verbal consent.

Topic guides were designed following a review of the literature and refined with multidisciplinary and patient and public involvement (PPI) input, to explore experiences and perceptions of remote interactions for health and social support. Interviews were conducted by JP (a geriatrician trained in qualitative research methods), via either telephone or video call. Interviews were audio-recorded and transcribed. Data collection continued until the team was confident that the breadth of representation and the depth of information obtained was sufficient to address the study’s aim.

Interviews were transcribed verbatim and analyzed using reflexive thematic analysis within a predominantly experiential qualitative framework [28,29]. The coding framework was generated following discussions among the team members, who had read a sample of transcripts; revised iteratively as it was applied to remaining transcripts (JP and EC); and presented for wide team review. Line-by-line coding was conducted using NVivo (version 12; QSR International) [30]. All extracts assigned to each code were reviewed and grouped to organize themes and further refined through discussion and interpretation with the research team and PPI. The multidisciplinary team included those with background in geriatric medicine (JP), nursing (EC and JR), psychology (MA, ND, and JR), neurology (AS) and general practice (DN and KW).

In total, 11 people with Parkinson disease, 10 caregivers, and 24 HCPs were interviewed. Overall, 5 interviews were conducted as people with Parkinson disease–caregiver dyad interviews, with 10% (1/10) of the caregivers subsequently also interviewed alone. In total, 5 individual caregiver interviews were conducted where the people with Parkinson disease felt unable to participate. Overall, 47% (8/17) of interviews with people with Parkinson disease and caregiver were conducted via video call and 53% (9/17) via telephone call, with duration ranging from 41 to 121 minutes. Of the 24 HCP interviews, 21 (88%) were conducted via video call, 2 (8%) were via telephone call, and 1 (4%) was in person, with duration ranging from 41 to 98 minutes. All people with Parkinson disease (11/11, 100%) and caregiver participants (10/10, 100%) were from the Southeast or East of England; HCPs were from the Southeast of England, the Midlands, and Scotland. Demographic details about the participants are presented in Tables 1 and 2.

Participants described the uses of remote communication technology in different aspects of their lives. All people with Parkinson disease and caregiver participants used telephones for personal communications; several of them had used video calls socially in the past, and all of them had used it during the pandemic. All people with Parkinson disease and caregivers had experienced telephone consultations, but only few of them had experienced video consultations; thus, they spoke about their experience of video technology in general. HCPs’ experience of video consultations was varied, with most consultations conducted via telephone (experienced by all; 24/24, 100%). Although not the focus of discussion, some participants described the use of asynchronous email or SMS text message communication. All remote consultations had been a result of the pandemic, with a few now expressing it as a preference. Several caregivers for people with Parkinson disease with severe impairments explained that the people with Parkinson disease could not use the telephone or video themselves. All people with Parkinson disease and caregiver participants had established Parkinson disease; HCPs recalled experience of both new and established patient encounters. The interview discussions led to four themes: “the nature of remote interactions,” encompassing subthemes “a transactional exchange,” “is it real?” and “a risky process”; “challenges exacerbated by being remote,” encompassing subthemes “communication and understanding,” “interpersonal dynamics,” and “significant discussions”; “expectation versus reality,” encompassing subthemes “anticipated barriers” and “expected advantages”; and “optimizing for the future,” encompassing subthemes “support for people with Parkinson disease and cognitive impairment and caregivers,” “professional development,” and “service improvement” (Textbox 2). Additional quotes from participants are provided in Multimedia Appendix 1.

Differences in the interaction via remote technologies were described, typically regarding the lack of physical contact (including examinations) and visual information and cues. The consequences are encompassed by three subthemes: “a transactional exchange,” “is it real?” and “a risky process.”

Participants described challenges in health care interactions driven by the condition, many of which were exacerbated by being remote. They were grouped into three subthemes: “communication and understanding,” “interpersonal dynamics,” and “significant discussions.”

With the rapid implementation of remote consultations owing to the COVID-19 pandemic, many participants reflected on what they had expected the experience to be compared with the reality. This is encompassed by two subthemes: “anticipated barriers” and “expected advantages.”

Participants from all 3 groups anticipated that remote technology will continue to be used in health care beyond the pandemic and reflected on how that could best be navigated. Their suggestions cover three domains: “support for people with Parkinson disease and cognitive impairment and caregivers,” “professional development,” and “service improvement.”

HCPs, people with Parkinson disease, and caregivers perceived remote interactions as more transactional, lacking personalization, and challenging for building rapport. They questioned whether remote consultations could be used as a substitute for real in-person consultations. Limitations of remote consultations were perceived, particularly, in conferring great risk. These issues were more prominently perceived for telephone consultation than video consultations, but existed for both modes of communication, with most participants considering them inferior to in-person consultations.

Issues for this population were intensified through remote technology, including communication and cognitive challenges, balancing people with Parkinson disease and caregivers within consultations, and significant discussions (eg, about the future). Perspectives had evolved, with some anticipated barriers not materializing (such as age being a restriction to access) and some expected advantages not coming to fruition (such as saving time). Although participants were generally surprised by the relative success of remote consultations and confidence in remote technologies was increasing, most participants still preferred in-person consultations. People with Parkinson disease, and caregivers, compared with HCPs had divergent perceptions about efficiency of remote consultations, with the former reporting them to improve efficiency and save time, but the latter typically rejected the notion of time being saved. Participants proposed ideas to improve services, anticipating a combination of remote and in-person health care consultations moving forward.

To the best of our knowledge, this is the first study to explore remote consultations for people with Parkinson disease in a real-life setting, to explore these 3 groups’ perspectives, and to focus on people with Parkinson disease and cognitive impairment.

Both human and technical aspects of telemedicine have been identified as contributing to quality [32], which were also apparent in our study. Within Parkinson disease, telemedicine has been shown to be both feasible [11-14] and associated with high rates of satisfaction both in studies [13,14,18,33,34] and in the limited reports of real-life application [35,36]. Studies have been small and heterogeneous (eg, regarding frequency of consultation and whether telemedicine replaced or supplemented routine care) and produced mixed results regarding quality of life and clinical outcomes [37]. As such, effectiveness of remote models compared with in-person consultation remains inconclusive. The advantage of reduced travel burden for patients and the barriers from technological problems and limited physical examination have been consistently reported. Studies have recruited predominantly digitally literate, well-educated, White samples, which may not be representative of the wider population with Parkinson disease [37], and few studies report cognitive status. Studies typically provided equipment, software, and technical support, with consultations delivered by clinicians trained and experienced in telemedicine, which may not be applicable to standard clinical care models. This study gives insight into the real-life experiences of clinical remote consultations in a typically understudied population, within the UK National Health Service. An evolving body of literature, typically based on HCP reports of personal experience, offers tips to clinicians undertaking remote consultations [38-41]. This study bolsters this with the patient and caregiver perspective and nuance for this population.

Accounts of remote consultations as “transactional” are consistent with those reported in the study of other conditions and contexts [4,42]. An analysis of primary care telephone encounters found more biomedical information exchange than psychosocial communication, and the telephone consultations were a less patient-centered approach, which could be attributed to the short duration of interaction [42]; however, in our study, remote consultations were not thought to be shorter in this population. The relationship between duration and quality of consultation is debated [43,44]. Participants in our study strongly believed that more consultation time was beneficial, perhaps reflecting the condition complexity. However, the inconsistency suggests that loss of personability remotely is not purely time driven. A qualitative study of neurology consultations identified a “business-like” style and ability to “take control” in remote consultations, which were perceived as advantageous. However, the perception of the dynamic as “transactional” was portrayed as a disadvantage by people with Parkinson disease, caregivers, and some HCPs in our study. The reduced HCP enjoyment of interactions when remote resonates with reduced consultation satisfaction previously reported [4].

Although not widely reported previously, the perception of remote consultations as not being real resonates with a primary care study reporting that some people expected telephone encounters to determine if or when they would be seen in person [42]. This may be more pronounced in this study owing to the rapid shift to remote consultations during the pandemic and highlights the need to promote understanding of their purpose. The perception of increased risk with remote consultations is mirrored in studies of clinicians’ perspectives within primary and secondary care [4,45]. The importance of observation and physical examination is particularly widely reported in neurology [4] and Parkinson disease [6,16,18]; however, there has been less attention to clinicians sensing clinical judgments, which was marked in our study. Clinicians’ sixth sense has been discussed in psychology and acute care patient safety literature [46], but perhaps is more widely applicable.

Communication problems in Parkinson disease are well known [47,48], and health communication research has long established the importance of nonverbal communication [49], which is unavailable in telephone consultations. Difficulties relating to memory and discussion being directed to caregivers with risk of exclusion of the patient themselves have been reported in remote consultations for dementia [20]. Cognitive impairments are widely perceived to be potential barriers to remote consultations [4,39,40,50]; consideration of mental capacity for suitability of remote consultation is highlighted in the UK General Medical Council guidance [51]. The effect of nonmemory cognitive impairments, such as executive dysfunction [52], alongside speech and behavioral symptoms, may create even more difficulty in sustaining complex discussions for people with Parkinson disease. This is particularly relevant for significant discussions (such as diagnoses and prognoses), which are difficult remotely, across disciplines [4,53].

In a recent study of remote primary care consultations for people with dementia [20], older age conferred more barriers, but this was not replicated in this study, where mixed experiences were reported, but not predictable from age. Instead, familiarity with technology was a facilitator; however, those with more significant cognitive impairment may have lost digital skills and confidence or be unable to transfer it to a new context. Increased confidence with remote consultations over time has been recognized during the pandemic [45,54], thus supporting the concept of practice. Advantages regarding convenience and comfort for remote consultations appear widespread [4,6,53], but perhaps more so in Parkinson disease owing to exacerbation of symptoms with stress [55,56]. A qualitative study of the effects of the COVID-19 pandemic, which touched on remote consultations [57], and another study of experiences of people with Parkinson disease and HCPs regarding Parkinson disease management during the COVID-19 pandemic [19] similarly found mixed opinions of remote consultations. In the latter, several HCPs reported improved service efficiency, which was not experienced by the HCP participants of our study. This may be a particular issue for those with cognitive impairment, which was not explored as a factor in either of these studies.

The need for evolution of platforms, infrastructure, and resource within clinical health care systems such as the National Health Service, while preventing health inequalities, corresponds with other UK-based studies of remote consultations [4,53,54], but with specific needs of this population: time, simplicity, and flexibility. Flexibility is recognized to be necessary in delivering personalized care [58]. The expectations of remote consultations are varied, and importantly, perceptions of efficiency and saving of time differed among people with Parkinson disease and caregivers, compared with HCPs. This discrepancy may lead to dissatisfaction on both sides. Our findings highlight that cognitive impairment covers a range of abilities and support for individuals varies; therefore, blanket procedures will not be appropriate. The barriers to remote consultations were mostly portrayed as challenges rather than absolute disadvantages, perhaps owing to the expectation that remote models of care will continue and the hope that these issues can be surmounted.

This is the first study including an underrepresented population (people with Parkinson disease and cognitive impairment) and triangulating the perspectives of patients, caregivers, and HCPs. Conducting the study remotely enabled inclusion of health services from multiple geographical areas, and snowballing enabled a wide reach, but may have predominantly reached individuals with specific interest in the topic. Inclusion of participants with subjective cognitive symptoms rather than a formal diagnostic process prevented being restricted by underdiagnosis, which is a recognized problem [27]. However, we cannot formally consider interpretation by objective severity of impairment. As has been a long-standing issue in Parkinson disease research [59], challenges were faced in recruitment of ethnic minority participants, despite targeted efforts, which may limit the applicability of the findings to these groups. Clinical audit data show 92% of people with Parkinson disease in neurology and Elderly Care Services in the United Kingdom to be White individuals [60], but even the use of primary care recruitment in ethnically diverse areas did not increase the diversity of our participants. Validity of interpretation was ensured through PPI consultation and a multidisciplinary clinical and academic team.

An unavoidable challenge of research in this population is that the condition often causes communication difficulties. Some participants had difficulty in expressing their views, and caregivers proxy views could be biased. Individuals who are not comfortable or able to communicate via telephone or video or with limited English language skills may be underrepresented. Although the range of professional backgrounds represented brings richness to these data, it is important to recognize regional variation in health services [61]; many people with Parkinson disease will not routinely encounter this range of specialist professionals [62]. The study was conducted within the United Kingdom and may not be representative of health services in other countries.

This study adds to the literature on remote consultations, with consideration to this subset of patients and caregivers. Although it was clear that care and consultation method needs to be personalized to the individual, awareness of these issues and the suggested improvements can help to manage expectations and optimize remote interactions, as summarized in Textbox 3. Future studies should continue to evaluate remote service delivery in real life as it evolves and as the pandemic situation changes. Further studies on advantages of video consultations over telephone consultations and on asynchronous remote e-consultations with people with Parkinson disease would also be valuable.

Many advantages and challenges of remote consultations are universal, but there are some specific issues to consider for those with cognitive impairment in Parkinson disease, owing to the combination of physical and cognitive symptoms and psychological factors, such as exacerbation of impairments because of anxiety. HCPs, people with Parkinson disease, and caregivers perceived remote interactions as more transactional, lacking personalization, challenging for building rapport, not real consultations, and riskier owing to their limitations. This applied particularly to telephone consultations, but also to video calls, to a lesser extent. Access and technical barriers limited the use of video consultations. In contrast to perceptions of people with Parkinson disease and caregivers and reports in previous studies of people with Parkinson disease, HCPs denied time being saved with the change to remote consultations.

Although challenges and descriptions of negative experiences were universal, in practice, remote consultations had worked better than expected by many participants, and some anticipated barriers were not actually experienced; for example, many older people were unexpectedly accessing consultations remotely. These experiences should be considered when planning future remote health care for people with Parkinson disease.