Longitudinal qualitative assessment of meaningful symptoms and relevance of WATCH-PD digital measures for people with early Parkinson’s

doi:10.21203/rs.3.rs-5356657/v1

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Longitudinal qualitative assessment of meaningful symptoms and relevance of WATCH-PD digital measures for people with early Parkinson’s

https://doi.org/10.21203/rs.3.rs-5356657/v1

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Background: Longitudinal qualitative data on what matters to people with Parkinson's disease are lacking and needed to guide patient-centered clinical care and development of outcome measures.

Objective: To evaluate change over time in symptoms, impacts, and relevance of digital measures to monitor disease progression in early Parkinson’s.

Methods: In-depth, online symptom mapping interviews were conducted with 33 people with early Parkinson's at baseline and one year later to evaluate (A) symptoms, (B) impacts, and (C) relevance of digital measures to monitor personally relevant symptoms. Maps and transcripts were coded for frequencies, Likert scale rankings (0=Not present to 4=Most bothersome), and thematic findings. Wilcoxon Signed Rank test was used to evaluate change over time.

Results: Other than walking and balance, most motor symptoms did not change significantly from baseline to one year later. Multiple significant changes were observed in non-motor areas (cognition, speech, sleep, mood, fatigue, pain; p<0.05) and functional impacts (mobility, effort to do usual activities, personal comfort; p<0.05). Thematic analysis revealed ability to cope with and compensate for actual or anticipatedsymptoms reduced disruptions to well-being and changed how bothersome symptoms were. All digital measures targeted symptoms that were personally important to most participants (>80%).

Conclusion: Non-motor and walking/balance symptoms changed sooner than other motor symptoms during the course of one year. Evaluation of coping and compensatory mechanisms may be essential to understanding symptom bothersomeness at a given point in time. Smartphone and smartwatch digital measures were relevant to personally meaningful symptoms of early PD.

Neurology

Personalized Medicine

Parkinson’s

qualitative

symptoms

Patient experience

digital health technology

A growing body of research has been conducted to identify the symptoms of Parkinson’s disease (PD) that matter most to people with Parkinson’s disease (PwP), yet understanding as to how priorities might change with time remains limited [1–4]. Systematic review of recent studies point to a range of motor and non-motor symptoms that are prevalent and bothersome in early stages [5], with important differences compared to later stages reported in cross-sectional studies [6, 7]. However, systematic, longitudinal assessment of symptoms and impacts to demonstrate within-person change over time is lacking. This information is greatly needed to inform priorities for clinical care and support development of new outcome measures that target meaningful aspects of health [8, 9].

At present, there are no outcome measures sufficiently sensitive to detect clinically meaningful change in early PD [10–12]. This has hindered clinical care and the development of new drugs to delay or halt disease progression [13, 14]. Thus, development of sensitive and reliable measures to monitor disease progression is a top priority that is contingent upon understanding what matters to people at different stages of disease [15]. This study aimed to systematically evaluate personally meaningful symptoms and impacts of disease longitudinally, along with perceived relevance of new digital monitoring technology to capture what mattered to people with Parkinson’s.

Study Background

This longitudinal qualitative study was conducted as a companion study to the WATCH-PD2 (Wearable Assessments in The Clinic and at Home in PD) study [16]. WATCH-PD2 is an ongoing longitudinal, multi-center trial evaluating smartphone and smartwatch-based tasks (Supplement A) designed to monitor motor and cognitive function in individuals with early untreated PD (< 2 years from clinical diagnosis) versus controls [17]. This qualitative study was conducted at the conclusion of Year 1 of the digital study to systematically assess (1) personally meaningful symptoms and impacts of Parkinson’s and (2) relevance of the WATCH-PD smartphone and smartwatch digital measures (hereafter digital measures) to monitor these meaningful aspects of disease. Baseline digital data and Year 1 qualitative data were reported previously [1, 17, 18]. This manuscript presents longitudinal qualitative findings, including self-reported changes in symptoms and relevance of digital measures over time. IRB approval (University of Rochester IRB#00006429; University of Massachusetts, Dartmouth IRB#23.044 ) and electronic informed consent were obtained prior to data collection.

Setting, sample

All individuals who completed the Year 1 WATCH-PD qualitative interviews (N = 40) were invited to complete a second interview one year later. Screening and enrollment statistics are presented in Fig. 1. Incentives were offered for participation.

Data collection

Interview procedures were the same for both years. A concurrent mixed-methods design was used. Data collection began with a brief online survey of current PD symptoms and perceived relevance of nine digital measures, followed by a two-hour online interview using (1) symptom mapping; (2) standardized cognitive debriefing on digital measures; and (3) mapping of digital measures with meaningful symptoms identified in the map.

Survey [19, 20]. Demographic data were obtained and reviewed with the participant for accuracy. Participants were asked about PD medication use, current symptoms, and personal relevance of digital measures (Supplement B). This was used as a starting point to inform the online interview.

Online interviews. The same interviewer conducted interviews at both time points (JRM; white, female, PhD prepared nurse practitioner) via Zoom video-conferencing, and were recorded with participants' permission. The interview followed a semi-structured interview protocol (Supplement C) and was conducted in three parts: (1) Symptom mapping, (2) Cognitive interviewing about digital measures, and (3) mapping of measure to personal symptoms to evaluate relevance. The interview protocol was developed by a consensus group of experts, including people with lived experience and regulators, with attention to patient-focused drug development guidance [18].

Part 1: Symptom mapping

Symptom mapping is a hybrid Qual/Quant technique in which participants are assisted by a trained interviewer to create a visual word diagram of their personal symptom experiences using mind mapping software [18]. The interviewer reviewed each participant’s survey data prior to the interview and entered all symptoms reported on survey into the map as a starting point for the activity. Symptoms were recorded as yellow nodes, and dependent lines attached to nodes were used to describe impacts and any details about the symptom [21]. During the online interview, steps for building maps were: (1) Enter spontaneously reported symptoms and related impacts; (2) Probe for common symptoms or impacts not spontaneously mentioned; (3) Rank order symptoms by how bothersome they are currently (range: most bothersome to not bothersome); (4) Add call out details that explain what makes symptoms more or less bothersome; (5) Compare the current map to the prior year's map to explore changes over time. Steps 1, 2, 4, and 5 provide in-depth qualitative data on lived experiences (maps and transcripts), while Step 3 enabled quantification of symptoms based on the underlying Likert scale values of the bothersomeness framework. Probed symptoms were identified in prior literature reviews and from Year 1 interviews [1]. All symptom maps were co-created by the interviewer and participant, with iterative, real-time editing of maps and in-depth discussion used to ensured that the participant's experience was accurately depicted (member checking).

Part 2: Cognitive interviewing

Following a brief break, the interviewer performed cognitive debriefing regarding the WATCH-PD digital measures. The interview protocol (Supplement B) included four standardized questions asked both years, plus further questions about relevance in Year 2 raised during analysis of Year 1 interviews. Standardized questions evaluated if participants understood what the task was asking them to do, what actions they used to complete it, what symptoms they believed it measured, and perception of relevance. Additional qualitative items in Year 2 asked participants to confirm if the symptom assessed by the digital measure was currently present, personally important (regardless of present), functionally limiting in any way, and personally bothersome (physically or psychologically). Finally, participants were asked if the digital measure was a relevant approach to assessing the symptom, if it related to real life for them, could be useful for monitoring change over time, and was personally relevant at their current stage of disease.

Part 3: Mapping tasks to personal symptoms

Lastly, participants returned to the symptom maps and were asked to integrate pictographs of each digital measure into their personal map next to the symptom(s) they felt the measure was relevant to, or to indicate if it was not relevant. This was done to confirm whether digital measures were associated with meaningful symptoms. The interview concluded with a final opportunity to review and edit the map. Participants were optionally given copies of their symptom maps at the conclusion of the interview.

Data analysis

Content coding of maps and thematic analysis of narratives were conducted by JRM, AL, and RA as described in Supplement E [22]. Maps were coded in Excel for presence and bothersomeness of symptoms, impacts, and relevance of digital measures. Descriptive statistics were computed for frequencies of symptoms and impacts. Wilcoxon Signed Rank Test was used to assess for differences in relative bothersomeness of symptoms and relevance of digital measures (Likert scale range 0–4) and McNemar's was computed for presence/absence of impacts from Year 1 to Year 2 using SPSS version 29.

Rigor and validity

Measures to enhance validity included data triangulation (survey, map, interview), member-checking, peer-debriefing, use of two coders at each stage for validation, and a formal audit trail [23]. Representative quotes are presented with numeric identifiers.

Sample and Interview characteristics

Demographics are shown in Table 1. Participants were an average of 3.2 years since diagnosis, and most were taking medication for PD at the time of the second interview (75.8% Year 2 vs. 40% at Year 1).

Symptom maps: Comparison of most bothersome symptoms from Year 1 to Year 2

Longitudinal comparisons of symptom frequencies and relative bothersomeness are presented in Figs. 2–4. Top motor symptoms remained consistent at both time points: tremor, fine motor, slow movement, gait changes, stiffness and balance. Of these, only gait difficulties increased in prevalence (60% vs. 85%), and bothersomeness from Year 1 to Year 2 (median 1 = Not bothersome vs. 3 = somewhat bothersome; Z=-2.03, p ≤ 0.05). Although slightly more common, tremor and slow movements became somewhat less bothersome over time but did not achieve statistical significance. Posture changes also increased in frequency (12% vs. 45%) and became more bothersome (Z=-2.4, p ≤ 0.05). Dyskinesias, not previously present, were reported by 15% of the sample by Year 2.

Top non-motor symptoms for both years were cognitive, mood changes, insomnia, fatigue, and pain. There was a significant increase in trouble remembering and multi-tasking from Year 1 (p < 0.05). Changes in voice quality (i.e., raspy or different sound) also increased (27–57% prevalent; Median rank 0 = Not present vs. 1 = Present/less bothersome in year 2, p < 0.05). Sleep symptoms remained constant. Personality changes were not noted in Year 1, but were reported by 24% of participants by Year 2 (p ≤ 0.01). Notably, participants reported less depression (42.4% vs. 33.3%) and fewer issues with nocturia (70% vs. 48%), although daytime urinary frequency was higher (36% Y1 vs. 48% Y2). Altered sense of smell and hypersalivation also increased in prevalence (18% vs. 45% and 15% vs. 48%, respectively) but were overall less bothersome.

Comparison of Physical and Psychosocial Impacts from Year 1 to Year 2

Fine motor difficulties, slow movements, impaired balance, and stiffness were the most reported causes of functional impairments. As shown in Fig. 5, by the second time point a year later, participants experienced significantly greater physical discomfort (42% vs. 79%, p ≤ 0.01) and effort to do usual activities (36% vs. 73%, p < 0.001). Impacts on physical functioning included altered mobility that most often affected walking (82%), exercise (79%), and tasks requiring hand dexterity (73% dressing, 73% handwriting, 70% computer use). Although less common, there were statistically significant increases in difficulty gripping and opening things, climbing stairs, and getting up from a sitting position.

Compared to Year 1, at Year 2 more participants reported that PD limited what they were able to do in various ways (88% vs. 100%), such as housework (42% vs. 73% p ≤ 0.05) and that their self-concept as a healthy, competent, and independent person was subsequently affected (67% vs. 82%). Greater difficulty was also experienced with interpersonal communication (91%, p ≤ 0.05). However, fewer people reported job related impacts (70% vs. 39%, p ≤ 0.05, possibly related to more individuals retiring (24% vs 52%). There was also a notable and significant increase in use of compensatory behaviors (55% vs. 91%, p ≤ 0.01) and introduction of a range of positive changes to improve health, take control, and fight disease progression (e.g., exercise, meditation, healthy eating; 45% vs. 79%, p ≤ 0.001).

Relevance of WATCH-PD digital measures to bothersome symptoms at Year 2

Maps. As shown in Fig. 6, all digital tasks were consistently relevant to more than 80% of participants. There was a significant gain in the reported relevance of the walking & balance task and the verbal symbol swap task (p < 0.01), corresponding with the statistically significant increases in these symptoms at Year 2.

Cognitive interview. For both years, excluding one instance, all participants understood what they were asked to do and generally completed tasks correctly (Column A, Table 2). A few participants reported using compensatory strategies to improve performance on certain tasks, such as turning the phone on the table during the shape rotation task or using their tremor to inflate tapping scores on the finger tapping task. These individuals recommended adding specific directions on what to do versus not do on potentially gameable measures to offset performance drive.

P23: It's easy to cheat on. Once you discover it, your body tells you, "I don't want to tap [correctly], I just want to do this [cheating]. It's easier to cheat than it is to actually do the thing.

P21: I could cheat… or even accidentally cheat. You're not really moving [the fingers] correctly, but it's still giving you some points. I could just tap 'em together rather than alternating.

Relevance profiles from cognitive interviewing for digital measures are shown in Fig. 7, with supporting statistics in Supplement F. On average, all measures targeted symptoms that were personally meaningful and were thus viewed as relevant to monitoring progression of PD symptoms ( rated > 8/10). Nearly 75% of participants (25/33) suggested that making gait, balance, and cognitive tasks longer and "more challenging" would increase relevance of these measures to early PD, as the tasks seemed too easy to detect subtle early changes. Common suggestions included standing on one leg to test balance, walking longer distances on uneven terrain, and performing activities while distracted (multi-tasking). Recommendations to address technological issues, including intermittent lack of responsiveness of the application to touch or voice, were reiterated at both years.

Key theme: Coping with PD is a highly variable and dynamic process.

Participants experienced PD as a progressive disease and described trying to cope with both present and potential future symptoms (i.e. symptoms not yet experienced). As one participant expressed: "The reality is I am going to get worse" (P4). Potential symptoms were those the individual worried they would develop later on, which was often the case with cognitive and speech symptoms (i.e., "Will I have it?" or "Do I have it?"). Both present and potential symptoms were a source of worry about the future (i.e., "How bad will it get?"). In several instances, participants reported experiencing symptoms on survey that they later clarified were not currently present, rather something that they were worried about and "watching for."

P19: I think I'm more concerned about the future [symptoms].

P11: This is the troublesome part about cognitive decline—I can’t tell. Is it happening?

P38: The thing that bothers me is how bad is it going to get over time?

Coping with PD varied within and between individuals and included: (1) anticipated onset/worsening of symptoms, (2) disruption in personal well-being, and (3) physical and/or psychological adaptations (e.g., compensatory behaviors) that modified impact and improved ability to cope with present or potential experiences, as depicted in Fig. 8. In general, the extent to which a symptom was personally disruptive (i.e., "bothersome") was influenced by the individual's ability to physically accommodate or psychologically adjust. Situational context also affected the impact of the symptom (e.g., retirement vs. active employment). An individual might adapt successfully to one symptom yet experience disruption from others, based on context.

P5: Thinking is part of my work…I can work around slowness [but] I'm not as sharp, and it concerns me for work.

Physical accommodations included workarounds that provided a functional advantage in task performance. This included learning to perform activities of daily living (ADLs) with the non-affected hand (mousing, typing, grooming), avoiding certain types of clothing (buttons), and use of dictation to compensate for fine motor difficulties with typing. Common cognitive adaptations included writing lists, use of memory aids and recall strategies, and setting reminders on phones to complete tasks.

P2: I'm looking for other ways to get around the problem but still get things [done] the way I need to… I'm always looking for shortcuts.

Psychological adjustments included normalizing, meditation, positive thinking, reframing strategies, acceptance, and engagement in alternate positive activities such as support groups, exercise groups, or volunteer work (e.g., finding meaning).

P36: I'm just used to it.

P20: Parkinson's is going to be with me…this [is] a life-changing thing, but I try to deal with it in a positive way.

Ultimately, the ability to mitigate the impact of a symptom by physical or psychological adjustments resulted in a decreased tendency to report or prioritize the compensated symptom and translated to reduced bothersomeness on ranking.

This is the first longitudinal qualitative study to systematically evaluate change over time in prevalence and bothersomeness of early PD symptoms and relevance of digital measures to monitoring what matters to patients. We found that the WATCH-PD digital measures were relevant to most people at both time points. Despite the ceiling effect, the consistently high ratings are encouraging and suggest that digital measures target symptoms that matter from the patient perspective. While not yet available for clinical practice due to being in early stages of validation, the hope is that phone or watch-based digital measures may eventually enable accessible, personalized disease monitoring that can aid in medication management, capitalizing on the widespread availability of these devices to support clinical care.

We also observed that baseline symptoms that were most bothersome (e.g., tremor, fine motor, slow movement, cognitive difficulties, mood changes, insomnia) remained a top priority one year later, which extends on knowledge from prior cross-sectional studies assessing symptoms at a single time point [1, 2, 4, 6]. Other than gait, most motor symptoms did not change significantly in one year. By contrast, worsening was observable in multiple non-motor areas, including cognitive, speech, psychiatric, sleep, and urinary domains. This has important implications for clinical trials, suggesting that trial duration of longer than 12 months might be needed to detect meaningful change in motor symptoms, whereas non-motor symptoms might have potential to show progression sooner. Clinicians may benefit by educating patients that Parkinson’s is more than a motor disease.

It is also important to note that the greatest change over one year was seen in functional impacts of symptoms on aspects of mobility, physical comfort, and increased effort to perform usual activities (e.g., work, housework, interactions with others). Based on participant narratives, we conclude that functional changes could serve as an earlier and potentially more sensitive indicator of early disease progression than individual symptoms alone. A possible explanation for this is that functional impairments can be attributable to multiple symptoms conjointly, such as altered fine motor, slowed movements, and tremor all impacting computer use. Thus, while change in a single symptom might not achieve statistically significant change in 12-months, functional impairments might become apparent sooner.

From a clinical standpoint, focusing on the impact of symptoms (i.e., what the person can/cannot do or now does differently) rather than the symptom itself may be a more accurate indicator of symptom burden, and align better with what matters to people living with PD. For example, despite increased prevalence and still being important, we found that certain motor symptoms (e.g., tremor, bradykinesia) were comparatively less bothersome a year later. Others have reported similar findings [6], however reasons for this have not been elucidated. One obvious explanation is the increased use of dopaminergic medication, which would alleviate symptoms of tremor and bradykinesia. However, our data also suggest that an individual’s ability to cope with and compensate for symptoms also moderates impact and bothersomeness. For instance, some participants indicated that mild-moderate tremor was easier to compensate for than cognitive symptoms, thus making the latter more bothersome to them.

Ability to compensate and cope appears to be a key factor in how meaningful a symptom is at any point in time. Lazarus & Folkman (1984) described coping as the "cognitive change and behavioral adaptation to something that exceeds the resources of the person"[24]. These concepts of coping have been explored across diverse diseases, including heart failure, chronic pain, diabetes, and other neurodegenerative diseases, with evidence of similar coping strategies [25–31]. In particular, the ability to cognitively restructure and problem solve has been identified as central to coping [32, 33], and in the present study reduced the burden of symptoms [34]. Related to this, we found a significant rise in positive behaviors to “take control” of PD, which appeared to improve quality of life [35]. In light of past and present findings, we would propose that assessing coping style and strategies may be helpful to understand symptom burden and disease progression [26].

Unfortunately, no consensus currently exists regarding what to measure with respect to coping in PD. Multiple models and frameworks have been proposed over the past 20 + years [25, 26, 36–39], which present challenges for measurement. Harmonization of concepts will thus likely be needed to enable evaluation of coping in PD. Beyond clinical care, this is also relevant to drug trials, as failure to account for the potentially moderating impact of adaptive coping behaviors might result in misattribution of treatment efficacy or lack thereof.

Lastly, the conceptual model presented in this manuscript points to anticipating and disrupting phases as important precursors to adjusting and adapting [1], which has broad relevance for both clinical practice and research. Anticipatory stress and grief have been extensively reported in other diseases [40] and are known to occur in later stage PD [41]. Similarly, others have reported anticipation of worsening pain and posture changes [42, 43]. Combined with present findings, we conclude that anticipation of future symptoms and disease progression is almost certainly an important aspect of the early PD experience, and might result in substantial personal distress even in the setting of minimal symptoms Thus, clinicians should aim to assess, educate, and intentionally support people with PD at all stages to achieve optimal coping, a new normal, and a preserved sense of self [44].

Limitations

Limitations of this study include a smaller sample size, which is consistent with in-depth qualitative research, and representation of mostly white participants attributable to parent study demographics. Greater diversity is needed in PD research and additional work will be needed to understand if findings reported here apply to non-white populations or those outside the U.S. Furthermore, longer follow periods might be needed to evaluate change, as only modest worsening in symptoms were noted over one year. We believe this is useful information that can help to inform duration for future clinical trials. Despite noted limitations, our data clearly indicate what matters to people with PD and can help to guide patient-focused drug development efforts and clinical care.

This study emphasizes the importance of mixed qualitative and quantitative strategies to understand what matters to people with PD so as to guide patient-centric care and advance clinically meaningful endpoints. All digital measures were broadly relevant. Fewer changes were found in self-reported prevalence or bothersomeness motor symptoms, whereas greater change was observed in non-motor areas and functional impacts. Bothersomeness of symptoms was affected by ability to cope (i.e, physically or psychologically adjust). Thus, evaluating disease progression via self-reported symptoms might require concurrent assessment of compensatory coping strategies to control for sources of variability that might otherwise obscure ability to detect change over time. Lastly, greater psychosocial support for individuals in the misnomered PD "honeymoon period" may be essential to promote adjustment and alleviate distress [45].

Conflict of interest statement

ERD has ownership interests in Included Health, Mediflix, SemCap, Synapticure. He has received Honoraria from Adivo Associates France, American Neurological Association, Elsevier, HMP Education, International Parkinson and Movement Disorder Society, Massachusetts Medical Society, Michael J. Fox Foundation, National Institutes of Health, National Multiple Sclerosis Society, Northwestern University, Patient-Centered Outcomes Research Institute, Philadelphia Neurological Society, Stanford University, Sutter Health, Texas Neurological Society, University of Toronto,, He has consulted for Abbott, Abbvie, Acadia, Acorda Therapeutics, Advarra, Biogen, Biohaven Pharmaceuticals, BioSensics, Boehringer Ingelheim, Caraway Therapeutics, Cerevance, CuraSen, DConsult2, Denali Therapeutics, Eli Lilly, Genentech, Health & Wellness Partners, HMP Education, Kairos Cinema, LLC (PBS), Karger, KOL groups, Life Sciences Consultant, Mediflix, Medrhythms, Merck, Mitsubishi Tanabe Pharma America, Inc., MJH Holdings, NACCME, Novartis, Otsuka, Praxis Medicine, Sanofi, Seelos Therapeutics, Spark Therapeutics, Springer Healthcare, Theravance Biopharmaceuticals, WebMD. He has received Grant funding from Averitas Pharma, Biogen, Burroughs Wellcome Fund, Michael J. Fox Foundation, National Institutes of Health, Pfizer, Photopharmics, Roche, Safra Foundation. JLA has received research support from the Michael J. Fox Foundation for Parkinson’s Research, Critical Path for Parkinson’s, NIH/NINDS, Biogen, the Huntington Study Group, and PhotoPharmics; received compensation as a consultant/steering committee/advisory board member from the Huntington Study Group, the Parkinson Study Group, AbbVie, VisualDx, BioSensics, Sana Biotechnology, Neuron23, Lundbeck, Biohaven, and the Michael J. Fox Foundation for Parkinson’s Research; received honoraria for speaking from the Huntington Study Group, the Parkinson Study Group, and American Neurological Association. JRM has consulted for and/or received research support from The Michael J Fox Foundation for Parkinson's Research, Critical Path for Parkinson’s, National Institutes of Health/NINR, Sigma Theta Tau International, and Lundbeck. The following authors (MK, AL, RA, VR, DS YX, PA, MT) have no conflict of interest to disclose.

Funding Source:

This study was funded by the Michael J Fox Foundation for Parkinson’s Research. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, Critical Path, FDA/HHS, the U.S. Government, or study sponsors.

Author contributions

Authorship contributions were as follows: planning and development of study (all), data collection and analysis (JM, RA, AL), drafting and revising of manuscript (all).

Acknowledgements

The researchers thank the many individuals who contributed to this work. The content is based on the perspectives of the authors and do not necessarily represent the official views of study sponsors. BrainBaseline application screenshots reprinted with permission from Clinical ink. The WATCHPD study qualitative and quantitative analyses strategies were conceptualized and led by the Critical Path for Parkinson’s digital drug development tool (3DT) initiative. Funding for the qualitative WATCHPD2 follow up reported in this paper was generously funded by The Michael J Fox Foundation for Parkinson's Research.

Data availability statement

De-identified datasets are available upon request.

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Tables 1 and 2 are available in the Supplementary Files section.

The authors declare no competing interests.

Table1.png
Table 1. Demographics
Table2.png
Table 2. Relevance of WATCH-PD digital measures by cognitive interviewing
SupplementA.WATCHPDdigitalmeasuresinYear2.pdf
Supplement A. WATCH-PD digital measures for Year 2
SupplementB.PreinterviewSurvey.pdf
Supplement B. Pre-interview Survey
SupplementC.Interviewprotocol.pdf
Supplement C. Interview protocol for Year 2
SupplementD.Samplesymptommap.pdf
Supplement D. Sample symptom map
SupplementE.Coding.pdf
Supplement E. Coding approach
SupplementF.ScoresforstandardizedassessmentV2.pdf
Supplement F. Supporting data for relevance ratings of WATCH-PD digital measures
SupplementG.AllsymptomfrequenciesSupplementaldata.pdf
Supplement G. All symptom frequencies

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Longitudinal qualitative assessment of meaningful symptoms and relevance of WATCH-PD digital measures for people with early Parkinson’s

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Abstract

Figures

Background

Methods

Study Background

Setting, sample

Data collection

Part 1: Symptom mapping

Part 2: Cognitive interviewing

Part 3: Mapping tasks to personal symptoms

Data analysis

Rigor and validity

Results

Sample and Interview characteristics

Symptom maps: Comparison of most bothersome symptoms from Year 1 to Year 2

Comparison of Physical and Psychosocial Impacts from Year 1 to Year 2

Relevance of WATCH-PD digital measures to bothersome symptoms at Year 2

Discussion

Limitations

Conclusion

Declarations

Conflict of interest statement

Funding Source:

Author contributions

Acknowledgements

Data availability statement

References

Tables

Additional Declarations

Supplementary Files

Status:

Version 1