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

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Mammen, PhD, Aaron Lerner, Raunak Al-Rubayie, Melissa Kostrzebski, and 8 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5356657/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract 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 anticipated symptoms 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 Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 Figure 6 Figure 7 Figure 8 Background 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. Methods 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. Results 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. Discussion 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. Conclusion 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 ]. Declarations 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. References Mammen J, Speck R, Stebbins G, Müller M, Yang P, Campbell M, Cosman J, Crawford J, Dam T, Hellsten J, Jensen-Roberts S, Kostrzebski M, Simuni T, Ward Barowicz K, Cedarbaum J, Dorsey E, Stephenson D, Adams J (2023) Relative meaningfulness and impacts of symptoms in people with early-stage Parkinson’s disease. 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Eur J Cancer Care (Engl) 29:e13192. 10.1111/ecc.13192 Nettleton JA, Burton AE, Povey RC (2022) No-one realises what we go through as Type 1s: A qualitative photo-elicitation study on coping with diabetes. Diabetes Res Clin Pract 187:109876. 10.1016/j.diabres.2022.109876 Bannon S, Reichman M, Popok P, Wagner J, Gates M, Uppal S, LeFeber L, Wong B, Dickerson BC, Vranceanu AM (2022) In It Together: A Qualitative Meta-Synthesis of Common and Unique Psychosocial Stressors and Adaptive Coping Strategies of Persons With Young-Onset Dementia and Their Caregivers. Gerontologist 62:e123–e139. 10.1093/geront/gnaa169 Eldred K (2011) Coping with Chronic Illness: Do Strategies Differ by Illness Type? Proquest, UNF Graduate Theses and Dissertations Tobin DL, Holroyd KA, Reynolds RV, Wigal JK (1989) The hierarchical factor structure of the coping strategies inventory. 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Rehabil Psychol 46:363–381. 10.1037/0090-5550.46.4.363 Lundqvist LO, Ahlstrom G (2006) Psychometric evaluation of the Ways of Coping Questionnaire as applied to clinical and nonclinical groups. J Psychosom Res 60:485–493. 10.1016/j.jpsychores.2005.08.019 Corti EJ, Johnson AR, Gasson N, Bucks RS, Thomas MG, Loftus AM (2018) Factor Structure of the Ways of Coping Questionnaire in Parkinson's Disease. Parkinsons Dis 2018, 7128069. 10.1155/2018/7128069 Bucks RS, Cruise KE, Skinner TC, Loftus AM, Barker RA, Thomas MG (2011) Coping processes and health-related quality of life in Parkinson's disease. Int J Geriatr Psychiatry 26:247–255. 10.1002/gps.2520 Neubauer AB, Smyth JM, Sliwinski MJ (2018) When you see it coming: Stressor anticipation modulates stress effects on negative affect. Emotion 18:342–354. 10.1037/emo0000381 Fox S, Azman A, Timmons S (2020) Palliative care needs in Parkinson's disease: focus on anticipatory grief in family carers. Ann Palliat Med 9:S34–S43. 10.21037/apm.2020.02.04 Martin SL, Jones AKP, Brown CA, Kobylecki C, Silverdale MA (2020) A neurophysiological investigation of anticipation to pain in Parkinson's disease. Eur J Neurosci 51:611–627. 10.1111/ejn.14559 Seuthe J, Heinzel A, Hulzinga F, Ginis P, Zeuner KE, Deuschl G, D'Cruz N, Nieuwboer A, Schlenstedt C (2024) Towards a better understanding of anticipatory postural adjustments in people with Parkinson's disease. PLoS ONE 19:e0300465. 10.1371/journal.pone.0300465 Jordan SR, Kluger B, Ayele R, Brungardt A, Hall A, Jones J, Katz M, Miyasaki JM, Lum HD (2020) Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners. Ann Palliat Med 9:S63–S74. 10.21037/apm.2019.09.10 Alonso-Canovas A, Voeten J, Gifford L, Thomas O, Lees AJ, Bloem BR (2023) The Early Treatment Phase in Parkinson's Disease: Not a Honeymoon for All, Not a Honeymoon at All? J Parkinsons Dis 13:323–328. 10.3233/JPD-225064 Tables Tables 1 and 2 are available in the Supplementary Files section. Additional Declarations The authors declare no competing interests. Supplementary Files 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 Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5356657","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":371923818,"identity":"6d3b86e8-099e-4889-87d0-aedbe83fa809","order_by":0,"name":"Jennifer R. 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Sample symptom map\u003c/p\u003e","description":"","filename":"SupplementD.Samplesymptommap.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5356657/v1/a9216e35f31183274b3fd6b0.pdf"},{"id":68205020,"identity":"52585938-24d0-471b-a524-3fa03e8233d6","added_by":"auto","created_at":"2024-11-04 16:09:29","extension":"pdf","order_by":7,"title":"","display":"","copyAsset":false,"role":"supplement","size":38394,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eSupplement E. \u003c/strong\u003eCoding approach\u003c/p\u003e","description":"","filename":"SupplementE.Coding.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5356657/v1/11b4c75c7c8370e908359a7f.pdf"},{"id":68205023,"identity":"73cc1db4-df8a-4778-8eef-2cd35225944f","added_by":"auto","created_at":"2024-11-04 16:09:29","extension":"pdf","order_by":8,"title":"","display":"","copyAsset":false,"role":"supplement","size":72076,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eSupplement F.\u003c/strong\u003e Supporting data for relevance ratings of WATCH-PD digital measures\u003c/p\u003e","description":"","filename":"SupplementF.ScoresforstandardizedassessmentV2.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5356657/v1/743a62347f7c4b9f5a0323fc.pdf"},{"id":68205049,"identity":"ccb55981-6eac-43f3-8b24-cb72de49d37f","added_by":"auto","created_at":"2024-11-04 16:09:32","extension":"pdf","order_by":9,"title":"","display":"","copyAsset":false,"role":"supplement","size":135400,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eSupplement G.\u003c/strong\u003e All symptom frequencies\u003c/p\u003e","description":"","filename":"SupplementG.AllsymptomfrequenciesSupplementaldata.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5356657/v1/860837984a13a3e26318a5e5.pdf"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003e\u003cstrong\u003eLongitudinal qualitative assessment of meaningful symptoms and relevance of WATCH-PD digital measures for people with early Parkinson’s\u003c/strong\u003e\u003c/p\u003e","fulltext":[{"header":"Background","content":"\u003cp\u003eA growing body of research has been conducted to identify the symptoms of Parkinson\u0026rsquo;s disease (PD) that matter most to people with Parkinson\u0026rsquo;s disease (PwP), yet understanding as to how priorities might change with time remains limited [\u003cspan additionalcitationids=\"CR2 CR3\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Systematic review of recent studies point to a range of motor and non-motor symptoms that are prevalent and bothersome in early stages [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e], with important differences compared to later stages reported in cross-sectional studies [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. 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 [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAt present, there are no outcome measures sufficiently sensitive to detect clinically meaningful change in early PD [\u003cspan additionalcitationids=\"CR11\" citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. This has hindered clinical care and the development of new drugs to delay or halt disease progression [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. 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 [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. 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\u0026rsquo;s.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy Background\u003c/h2\u003e \u003cp\u003eThis longitudinal qualitative study was conducted as a companion study to the \u003cb\u003eWATCH-PD2\u003c/b\u003e (Wearable Assessments in The Clinic and at Home in PD) study [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. WATCH-PD2 is an ongoing longitudinal, multi-center trial evaluating smartphone and smartwatch-based tasks (\u003cb\u003eSupplement A\u003c/b\u003e) designed to monitor motor and cognitive function in individuals with early untreated PD (\u0026lt;\u0026thinsp;2 years from clinical diagnosis) versus controls [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. 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\u0026rsquo;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 [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. 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.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eSetting, sample\u003c/h3\u003e\n\u003cp\u003eAll individuals who completed the Year 1 WATCH-PD qualitative interviews (N\u0026thinsp;=\u0026thinsp;40) were invited to complete a second interview one year later. Screening and enrollment statistics are presented in \u003cb\u003eFig.\u0026nbsp;1\u003c/b\u003e. Incentives were offered for participation.\u003c/p\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003eInterview 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.\u003c/p\u003e \u003cp\u003e \u003cb\u003eSurvey\u003c/b\u003e [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. 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 (\u003cb\u003eSupplement B\u003c/b\u003e). This was used as a starting point to inform the online interview.\u003c/p\u003e \u003cp\u003e\u003cb\u003eOnline interviews.\u003c/b\u003e 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 (\u003cb\u003eSupplement C\u003c/b\u003e) 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 [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e\n\u003ch3\u003ePart 1: Symptom mapping\u003c/h3\u003e\n\u003cp\u003eSymptom 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 [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. The interviewer reviewed each participant\u0026rsquo;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 [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. 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 [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. 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).\u003c/p\u003e\n\u003ch3\u003ePart 2: Cognitive interviewing\u003c/h3\u003e\n\u003cp\u003eFollowing a brief break, the interviewer performed cognitive debriefing regarding the WATCH-PD digital measures. The interview protocol (\u003cb\u003eSupplement B\u003c/b\u003e) 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 \u003cem\u003epresent\u003c/em\u003e, personally \u003cem\u003eimportant\u003c/em\u003e (regardless of present), \u003cem\u003efunctionally limiting\u003c/em\u003e in any way, and personally \u003cem\u003ebothersome\u003c/em\u003e (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.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003ePart 3: Mapping tasks to personal symptoms\u003c/h2\u003e \u003cp\u003eLastly, 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.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eContent coding of maps and thematic analysis of narratives were conducted by JRM, AL, and RA as described in \u003cb\u003eSupplement E\u003c/b\u003e [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. 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\u0026ndash;4) and McNemar's was computed for presence/absence of impacts from Year 1 to Year 2 using SPSS version 29.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eRigor and validity\u003c/h3\u003e\n\u003cp\u003eMeasures 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 [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Representative quotes are presented with numeric identifiers.\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\n\u003ch2\u003eSample and Interview characteristics\u003c/h2\u003e\n\u003cp\u003eDemographics are shown in \u003cstrong\u003eTable\u0026nbsp;1\u003c/strong\u003e. 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).\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\n\u003ch2\u003eSymptom maps: Comparison of most bothersome symptoms from Year 1 to Year 2\u003c/h2\u003e\n\u003cp\u003eLongitudinal comparisons of symptom frequencies and relative bothersomeness are presented in \u003cstrong\u003eFigs.\u0026nbsp;2\u0026ndash;4\u003c/strong\u003e. 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\u0026thinsp;=\u0026thinsp;Not bothersome vs. 3\u0026thinsp;=\u0026thinsp;somewhat bothersome; Z=-2.03, p\u0026thinsp;\u0026le;\u0026thinsp;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\u0026thinsp;\u0026le;\u0026thinsp;0.05). Dyskinesias, not previously present, were reported by 15% of the sample by Year 2.\u003c/p\u003e\n\u003cp\u003eTop 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\u0026thinsp;\u0026lt;\u0026thinsp;0.05). Changes in voice quality (i.e., raspy or different sound) also increased (27\u0026ndash;57% prevalent; Median rank 0\u0026thinsp;=\u0026thinsp;Not present vs. 1\u0026thinsp;=\u0026thinsp;Present/less bothersome in year 2, p\u0026thinsp;\u0026lt;\u0026thinsp;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\u0026thinsp;\u0026le;\u0026thinsp;0.01). Notably, participants reported \u003cem\u003eless\u003c/em\u003e 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.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\n\u003ch2\u003eComparison of Physical and Psychosocial Impacts from Year 1 to Year 2\u003c/h2\u003e\n\u003cp\u003eFine motor difficulties, slow movements, impaired balance, and stiffness were the most reported causes of functional impairments. As shown in \u003cstrong\u003eFig.\u0026nbsp;5\u003c/strong\u003e, by the second time point a year later, participants experienced significantly greater physical discomfort (42% vs. 79%, p\u0026thinsp;\u0026le;\u0026thinsp;0.01) and effort to do usual activities (36% vs. 73%, p\u0026thinsp;\u0026lt;\u0026thinsp;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.\u003c/p\u003e\n\u003cp\u003eCompared 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\u0026thinsp;\u0026le;\u0026thinsp;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\u0026thinsp;\u0026le;\u0026thinsp;0.05). However, fewer people reported job related impacts (70% vs. 39%, p\u0026thinsp;\u0026le;\u0026thinsp;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\u0026thinsp;\u0026le;\u0026thinsp;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\u0026thinsp;\u0026le;\u0026thinsp;0.001).\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\n\u003ch2\u003eRelevance of WATCH-PD digital measures to bothersome symptoms at Year 2\u003c/h2\u003e\n\u003cp\u003e\u003cstrong\u003eMaps\u003c/strong\u003e. As shown in \u003cstrong\u003eFig.\u0026nbsp;6\u003c/strong\u003e, all digital tasks were consistently relevant to more than 80% of participants. There was a significant gain in the reported relevance of the walking \u0026amp; balance task and the verbal symbol swap task (p\u0026thinsp;\u0026lt;\u0026thinsp;0.01), corresponding with the statistically significant increases in these symptoms at Year 2.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCognitive interview\u003c/strong\u003e. For both years, excluding one instance, all participants understood what they were asked to do and generally completed tasks correctly (Column A, \u003cstrong\u003eTable\u0026nbsp;2\u003c/strong\u003e). 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eP23:\u0026nbsp;\u003c/strong\u003e\u003cem\u003eIt'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.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eP21:\u0026nbsp;\u003c/strong\u003e\u003cem\u003eI could cheat\u0026hellip; 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.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eRelevance profiles from cognitive interviewing for digital measures are shown in \u003cstrong\u003eFig.\u0026nbsp;7\u003c/strong\u003e, with supporting statistics in \u003cstrong\u003eSupplement F\u003c/strong\u003e. On average, all measures targeted symptoms that were personally meaningful and were thus viewed as relevant to monitoring progression of PD symptoms ( rated\u0026thinsp;\u0026gt;\u0026thinsp;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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eKey theme: Coping with PD is a highly variable and dynamic process.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants experienced PD as a progressive disease and described trying to cope with both \u003cem\u003epresent\u003c/em\u003e and \u003cem\u003epotential\u003c/em\u003e future symptoms (i.e. symptoms not yet experienced). As one participant expressed: \"\u003cem\u003eThe reality is I am going to get worse\u003c/em\u003e\" (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.\"\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eP19:\u0026nbsp;\u003c/strong\u003e\u003cem\u003eI think I'm more concerned about the future [symptoms].\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eP11:\u0026nbsp;\u003c/strong\u003e\u003cem\u003eThis is the troublesome part about cognitive decline\u0026mdash;I can\u0026rsquo;t tell. Is it happening?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eP38:\u0026nbsp;\u003c/strong\u003e\u003cem\u003eThe thing that bothers me is how bad is it going to get over time?\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eCoping 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 \u003cstrong\u003eFig.\u0026nbsp;8\u003c/strong\u003e. 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eP5:\u0026nbsp;\u003c/strong\u003e\u003cem\u003eThinking is part of my work\u0026hellip;I can work around slowness [but] I'm not as sharp, and it concerns me for work.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePhysical 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eP2:\u0026nbsp;\u003c/strong\u003e\u003cem\u003eI'm looking for other ways to get around the problem but still get things [done] the way I need to\u0026hellip; I'm always looking for shortcuts.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePsychological 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).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eP36:\u0026nbsp;\u003c/strong\u003e\u003cem\u003eI'm just used to it.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eP20:\u0026nbsp;\u003c/strong\u003e\u003cem\u003eParkinson's is going to be with me\u0026hellip;this [is] a life-changing thing, but I try to deal with it in a positive way.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eUltimately, 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.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis 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.\u003c/p\u003e \u003cp\u003eWe 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 [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Other than gait, most motor symptoms did \u003cem\u003enot\u003c/em\u003e 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\u0026rsquo;s is more than a motor disease.\u003c/p\u003e \u003cp\u003eIt 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.\u003c/p\u003e \u003cp\u003eFrom a clinical standpoint, focusing on the \u003cem\u003eimpact\u003c/em\u003e of symptoms (i.e., what the person can/cannot do \u003cem\u003eor\u003c/em\u003e 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 \u003cem\u003eless\u003c/em\u003e bothersome a year later. Others have reported similar findings [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e], 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\u0026rsquo;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.\u003c/p\u003e \u003cp\u003eAbility to compensate and cope appears to be a key factor in how meaningful a symptom is at any point in time. Lazarus \u0026amp; Folkman (1984) described coping as the \"cognitive change and behavioral adaptation to something that exceeds the resources of the person\"[\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. 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 [\u003cspan additionalcitationids=\"CR26 CR27 CR28 CR29 CR30\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. In particular, the ability to cognitively restructure and problem solve has been identified as central to coping [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e], and in the present study reduced the burden of symptoms [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. Related to this, we found a significant rise in positive behaviors to \u0026ldquo;take control\u0026rdquo; of PD, which appeared to improve quality of life [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. 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 [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eUnfortunately, 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\u0026thinsp;+\u0026thinsp;years [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan additionalcitationids=\"CR37 CR38\" citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e], 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.\u003c/p\u003e \u003cp\u003eLastly, the conceptual model presented in this manuscript points to \u003cem\u003eanticipating\u003c/em\u003e and \u003cem\u003edisrupting\u003c/em\u003e phases as important precursors to adjusting and adapting [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e], which has broad relevance for both clinical practice and research. Anticipatory stress and grief have been extensively reported in other diseases [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e] and are known to occur in later stage PD [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. Similarly, others have reported anticipation of worsening pain and posture changes [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e, \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e]. 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 \u003cem\u003eall\u003c/em\u003e stages to achieve optimal coping, a new normal, and a preserved sense of self [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eLimitations 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.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis 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 [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e].\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003ch2\u003eConflict of interest statement\u003c/h2\u003e \u003cp\u003e\u003cb\u003eERD\u003c/b\u003e 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 \u0026amp; 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. \u003cb\u003eJLA\u003c/b\u003e has received research support from the Michael J. Fox Foundation for Parkinson\u0026rsquo;s Research, Critical Path for Parkinson\u0026rsquo;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\u0026rsquo;s Research; received honoraria for speaking from the Huntington Study Group, the Parkinson Study Group, and American Neurological Association. \u003cb\u003eJRM\u003c/b\u003e has consulted for and/or received research support from The Michael J Fox Foundation for Parkinson's Research, Critical Path for Parkinson\u0026rsquo;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.\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding Source:\u003c/h2\u003e \u003cp\u003eThis study was funded by the Michael J Fox Foundation for Parkinson\u0026rsquo;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.\u003c/p\u003e\u003ch2\u003eAuthor contributions\u003c/h2\u003e \u003cp\u003eAuthorship contributions were as follows: planning and development of study (all), data collection and analysis (JM, RA, AL), drafting and revising of manuscript (all).\u003c/p\u003e\u003ch2\u003eAcknowledgements\u003c/h2\u003e \u003cp\u003eThe 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\u0026rsquo;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.\u003c/p\u003e\u003ch2\u003eData availability statement\u003c/h2\u003e \u003cp\u003eDe-identified datasets are available upon request.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eMammen J, Speck R, Stebbins G, M\u0026uuml;ller M, Yang P, Campbell M, Cosman J, Crawford J, Dam T, Hellsten J, Jensen-Roberts S, Kostrzebski M, Simuni T, Ward Barowicz K, Cedarbaum J, Dorsey E, Stephenson D, Adams J (2023) Relative meaningfulness and impacts of symptoms in people with early-stage Parkinson\u0026rsquo;s disease. 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J Parkinsons Dis 13:323\u0026ndash;328. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.3233/JPD-225064\u003c/span\u003e\u003cspan address=\"10.3233/JPD-225064\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTables 1 and 2 are available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[{"identity":"1b4a7d97-6da6-48ce-af53-75b572a595ad","identifier":"10.13039/100000864","name":"Michael J. Fox Foundation for Parkinson's Research","awardNumber":"MJFF-024503","order_by":0}],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"University of Rochester","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Parkinson’s, qualitative, symptoms, Patient experience, digital health technology","lastPublishedDoi":"10.21203/rs.3.rs-5356657/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5356657/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e: \u0026nbsp;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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eObjective\u003c/strong\u003e: \u0026nbsp;To evaluate change over time in symptoms, impacts, and relevance of digital measures to monitor disease progression in early Parkinson’s.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e: 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: \u0026nbsp;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\u0026lt;0.05) and functional impacts (mobility, effort to do usual activities, personal comfort; p\u0026lt;0.05). Thematic analysis revealed ability to cope with and compensate for \u003cem\u003eactual\u003c/em\u003e or \u003cem\u003eanticipated\u003c/em\u003esymptoms reduced disruptions to well-being and changed how bothersome symptoms were. All digital measures targeted symptoms that were personally important to most participants (\u0026gt;80%).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e: \u0026nbsp;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.\u003c/p\u003e","manuscriptTitle":"Longitudinal qualitative assessment of meaningful symptoms and relevance of WATCH-PD digital measures for people with early Parkinson’s","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-11-04 16:08:48","doi":"10.21203/rs.3.rs-5356657/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"68d2b97e-2945-4463-a40e-58c46f2eddc2","owner":[],"postedDate":"November 4th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":39582056,"name":"Neurology"},{"id":39582057,"name":"Personalized Medicine"}],"tags":[],"updatedAt":"2024-11-04T16:08:48+00:00","versionOfRecord":[],"versionCreatedAt":"2024-11-04 16:08:48","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5356657","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5356657","identity":"rs-5356657","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}