PD Diary

Dear MDS Colleagues,

While PD diaries have provided valuable information as outcome measures, and often primary endpoints, in clinical trials of symptomatic therapies over the past 20 years, the advent of new technologies has opened the opportunity to reassess the balance between the simplicity of available diaries, almost exclusively designed in paper format, and the need to capture a wider range of individualized motor, non-motor, and circadian complex fluctuations with greater accuracy as an electronic diary/tracker interface (e-diary).

With the aim of bringing the PD diary to the digital age, the MDS Technology Task Force and the MDS Rating Scales Program Electronic Development Ad-Hoc Committee brainstormed on a set of desirable characteristics and developmental steps for a technology-enhanced diary to serve the needs of both clinical trials and clinical practice. At the request of the Movement Disorders editors, such document is now available for public comment (See links below) as an opportunity for readers who are not Task force members to give feedback online and participate in shaping what the new tool should aim for. 

The manuscript will be adapted according to comments and suggestions and all responses will documented online in what is to become “Supplementary Material 1”. The final product is expected to be published in Movement Disorders.

With gratitude for your efforts,

Alberto Espay, MD; Walter Maetzler, MD; and Álvaro Sánchez-Ferro, MD, on behalf of the MDS Technology Task Force and the MDS Rating Scales Program Electronic Development Ad-Hoc Committee. 



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If you prefer to share edits on a Word document, please send them to Dr. Espay at alberto.espay@uc.edu or aespay@gmail.comComments and suggestions will be accepted through Wednesday, November 7.

 

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Recent Comments

Title:
Comment on MDS PD e-diary initiative
By:
João Massano
Comment:

Many thanks for this important initiative and for sharing the results of your efforts.

In general I agree with the proposal, which is well designed. Just a few suggestions:

1) The diary should also include awake and asleep hours

2) The Task Force should consider the possibility that patient-reported and device-collected data might conflict. How to interpret this and what to do in this situation?

3) It is very important to consider clinical data safety, especially web based data. The Task Force should seek specialized advice from companies in this field, funded by the MDS. Alternatively tech industry partnerships would be welcome - for instance, Google would probably be a great partner for such an initiative

4) Please consider involving PD patients associations at some point

I would be happy to be contacted by the Task Force in order to contribute further, if you wish.

João Massano, MD

Centro Hospitalar Universitário de São João & Faculty of Medicine University of Porto, Portugal

Title:
complimentary development of caregiver-PD diary
By:
Andrea Pilotto
Comment:

Dear all,

thanks really a lot for sharing this beautiful manuscript and for your great contribution to the f care of PD patients, the review and the proposal are really great!

I just wonder whether it could be possible a complementary development of a caregiver-based PD-diary for motor fluctuations. I feel this could be a very important tool for the cross-validation of both patient-based and sensor-based data. On one hand, anosognosia/altered self-awareness of motor symptoms (especially for dyskinesia) could be present in some patients - on the other, cognitive impairment/ behavioral disturbances could potentially bias PD-diary.

A combined patient/caregiver PD-diary thus could be even more objective in the global digital assessment of patients.

Thanks really again for the initiative

Best,

Andrea Pilotto

Title:
You cannot have everything!
By:
Francesca Mancini
Comment:

Thank you for this paper that addresses an important topic in the field of movement disorders.

It is necessary to select a valid tool to accurately assess motor and non-motor fluctuations, and motor and non-motor symptoms and signs in patients who do not fluctuate. It is desirable that this instrument will be appropriate for both clinical practice and research.

My observations: I foresee a difficulty in correctly and comprehensively identifying all non-motor symptoms; I fear that older patients will not be able to use an e-diary, leading to reduced compliance; I believe that it is necessary to implement a feedback or reward mechanism to ensure compliance.

Finally, I wonder if the correct detection of motor and non-motor symptoms is able to provide an adequate correlation with the quality of life and functional disability of the patient. But perhaps this feedback is not necessary. You cannot have everything!

Title:
e-diary
By:
Celestina N. Almona
Comment:

This is a good idea. The important thing is that the state of the patient should be well recorded.

Title:
Excellent work
By:
Ryan T Brennan
Comment:

Excellent work on an area that is needed in understanding PD patient's symptoms and optimizing their treatment.

Title:
PD Diaries & Digital Technology
By:
Daniel Pichler
Comment:

Thank you very much for your invitation.

I agree with the authors' conclusions and rate the proposed framework for the developmental steps of PD Diaries as very helpful. It also gives a good overview of current developments.

Important points, which could be tackled a bit more in detail are: digital data protection as well as the point of view of the patients, e.g. digital literacy or digital education for patients.

Best regards

Daniel Pichler

Title:
the composition of the PD e-diary
By:
Suk Yun Kang
Comment:

Thank you for the comprehensive review about PD diaries. I agree.

It's important to keep a diary in detail, and I think that PD e-diary can record the state of patients in detail. I'd like to add some comments for the PD e-diary.

(1) Some patients have difficulty in recording the time they take their medication because there are many drugs they are taking. I hope there will be some ways to solve this.

(2) Patients complain of various nonmotor symptoms (NMS). I don't know which one will be more helpful clinically, whether just recording pre-determined major NMS or recording all symptoms of patients. I think it would be good to list all of their symptoms, let the patients choose their symptoms (There may be a limit on the number) , and write down a diary about them.

(3) I agree that objective measurements is needed. I hope that some objective measurements during sleep will be added.

Title:
Welcome to the digital health world
By:
János Csikós MD
Comment:

Please mention challenges with data protection. Please consider cloud application for data storage for the case of switch of end user devices (or lost devices) to prevent data loss and guarantee data collection continuity. Access protection of end user devices, and a separate access for caregiver data entry should be considered and rated as helpful for the e-diary. It seems obvious to me, but would miss the final validation step (psychometric and language validation, user acceptance test) described as a final step in this development plan. For me those listed development steps would not be a linear approach, but a parallel development strategy, with individual work packages and with a continuous harmonization of achievements and integration of the mentioned components in the e-diary application. Please correct typo Wilconxon to Wilcoxon in the supplementary document.

Title:
PD electric Diary in China
By:
Boyan Fang
Comment:

Thank you for all the works that you did for the care of PD patients. Very happy to see the new consideration about non-motor symptoms. For elderly patients, because their cognitive limitation and educational reason, convenience is the first situation that should be think about. Convenience determine the accurate.

Title:
suggestion for PD e-dairy validation
By:
Margherita Fabbri
Comment:

Congratulations to the authors for the extensive up-date on PD diaries and for this initiative. Treatment and assessment of PD motor e non-motor fluctuations is still an unmeet clinical need.

I think the manuscript covers most of the points of this topic.

My minor suggestions are:

1) to perform a survey among PD patients and caregivers, in order to understand "how they imagine a PD e-diary", "which kind of symptoms they would like to continuously monitor", "what are the main difficulties they have in telling the fluctuations of their symptoms to the doctor", ect;

2) e-diaries will be need to be validated against the current paper diary, at least against the "Parkinson Disease Home Diary" or the "CAPSIT-PD Diary", currently considered as "recommended" by the MDS Task Force on Rating Scales.

Title:
To the future?
By:
Roberta Baschi
Comment:

Thanks for sharing this very interesting topic! I think that the daily monitoring of the patient, in all the aspects of the disease (motor and nonmotor) is an important source of news for the progression of the disease and for the evaluation of treatment responsiveness. Also patients needs can be better understood. I think that considering the impact of cognitive impairment and psychiatric disorders on motor fluctuations could be useful, using fast and self-administering clinical scales (i.e. Qmci, NPI).

I am looking forward to hearing you on it

best regards

Roberta Baschi

Title:
The Parkinson diary
By:
Masharip Atadzhanov
Comment:

I think in the introduction should stipulated generalizability of the e diary to various populations/ ethnic groups and in the conclusion indicated limitations of the diary

It would be useful to take an account that PD is age related disese and many pations have other diseases such as DM, hypertension,....

in the table 1 in the section Contextual limitations, should be included Absent of caregivers.

Title:
Welcome idea
By:
Ana Lucia Rosso
Comment:

As a clinician and a researcher I found very difficult to apply the paper diary, mostly because of lack of understanding on the part of the patient. An action-independent system, at least in my country (Brazil) where most of the people has less than 8 years of education, will be more accurate in capture the real state(s) of the patient throughout the day. Attach a video recording of the patient at certain times, like half an hour before and after the time of levodopa dose could provide a better understanding of MF and NMF.

Congratulations on this important initiative.

Best wishes

Ana Rosso

HUCFF/UFRJ - Brazil

Title:
Neurologist CHU Point G, Mali, Bamako
By:
Toumany Coulibaly
Comment:

Congratulations to MDS for this initiative. From a clinical perspective, non-motor fluctuations assessment is really needed in developped countries.

Title:
E-Diary feedback
By:
IGOR PETROV
Comment:

Thank you on your invitation for the feedback.J think e-diary is a good idea and it will surely help for further clinical trials and more clinical experience.It is also important especially in the noticing of non motor symptoms which can also influence in the quality of life.

Title:
Multiple e-Watching on PD Diary
By:
XiaoPing WANG
Comment:

Wonderful. Multiple e-Watching on PD Diary coming true.

Some idea also in Shanghai

Title:
Congratulations for this wonderfull work.
By:
Foksouna Sakadi
Comment:

This document covers the needs well and responds well to the new requirements.

I totally agree with this work.

Best regards

Title:
e-diary
By:
Jens Carsten Möller
Comment:

Thank you very much for your invitation. For time constraints I will not be able to comment on the manuscript until 7th November, but I would like to let you know that I consider this a very timely and interesting initiative!

Best regards

Carsten Möller

Title:
missing link ?
By:
David L Keller, MD
Comment:

) It is not clear to me which link to click in the email, in order to view the proposed new PD diary.

2) Are there any older, established PD diaries online available for comparison?

Title:
MDS Ukraine
By:
Kostiantyn Stepanchenko
Comment:

Congratulations to the authors and MDS for this initiative. It is a nice idea to set the E-diary MDS.

I am looking forward to hearing you on it

Title:
PD Diaries and Treatment Options
By:
Sneha Mantri
Comment:

This is a major unmet need in the care of people with Parkinson disease. I particularly appreciate the authors' focus on non-motor symptoms, as these are drivers of health-related quality of life but are sometimes challenging to assess in clinic. The real-time feedback component is also important as it may boost patient self-agency and empowerment, as described by the authors.

From a clinical perspective, reams of daily data is likely to be overwhelming for patient and provider. Is there a way to integrate summative data into a visual graph-style format, which can be used to guide treatment decisions?

Title:
I agree
By:
Giovanni Albani
Comment:

Congratulations for this great work.

I found that all documents cover all needs exhaustively.

I was a past member of the previous MDS task force for telemedicine,

and if you need my collaboration in the future even for this task force,

I'm ready.

Best

Giovanni Albani

Title:
Diaries and Wearable Technology
By:
Tim Counihan
Comment:

The authors of the viewpoint review the limitations of diaries succinctly. There is a plethora of new data on inertial sensor technology and its application to the clinic. Commercial sensors are in widespread use, but whether they are truly informative remains unclear (to me, at least).The MDS should:

1. Explore whether the published literature on sensor technology accurately reflects the various motor states of PD patients as defined by clinicians.

2. Consider the simultaneous application of smart-phone based e-diary patient reporting of motor states.

3. Only when a reliable, objective wearable technology for monitoring motor fluctuations is available, should non-motor symptoms be addressed.

Title:
Functional state as a marker of overall PD control
By:
Subramaniam Nagasayi
Comment:

As a geriatrician managing elderly PD patients it is challenging enough already. I focus on functional state (BADL and IADL) of patients as a guide to drug therapy.

Should we do e-diaries in all PD patients or only those the patient or the physician anticipate/report concerns? I am keenly looking forward to using the e-tool in my patients.

But physicians also need training in using it and explaining to patients and caregivers to make it successful and sustainable.

Title:
Suggestion for PD diary
By:
Michelle Tosin, RN, MSN, PhD student, Brazil.
Comment:

Congratulations to the authors and MDS for this initiative. The details of the suggestions were sent to the e-mail. Overall, my suggestions were related to:

- Selection and analysis of non-motor symptoms

- The correlation with the drug therapy (oral, pacht, infusional, DBS)

- The Impact of Motor and Non-Motor Symptoms on Functionality and QoL

- The incorporation of specialized professionals for the development of the training of the users of the app

- The definition of cognitive parameters that limit patients' use of the app and indicate their use by family members or caregivers

- The creation of a channel for fast and easy access to professional experts for solving users' queries

- The psychometric parameters to be analyzed both in the definition of the phenomena of interest and the non-motor scales that will support the determination of the symptoms

- The addition of electronic devices to measure non-motor symptoms (a challenge).

Title:
Therapeutics should be sex-adapted
By:
Hermona Soreq
Comment:

most of the drugs we use today, for PD and other diseases have only been tested in males for simplicity and saving reasons in pre-clinical studies. This goes on since the FDA requests comparison of new drugs to the older ones and those were only tested in males as well. This protocol must be changed as women may benefit from other drugs or dose-adapted strategies.

Title:
I am not a clinician and dare not tell others how to do their job...
By:
hermona soreq
Comment:

The differences between men and women with PD should be studied more carefully so that treatment and diagnosis can be improved.

Title:
Suggestion for evaluation of PD diary
By:
David L. Keller, MD
Comment:

I suggest that the PD diary be released as an application program ("app") for Android and / or the iPhone. This would allow evaluation in real-life situations and in real time.

Title:
MDS Japan
By:
Masahiro Nomoto
Comment:

It is a nice idea to set the diary MDS.

I am looking forward to hearing you on it.

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