Patient and carer perspectives of telephone parkinson's clinic during the COVID Pandemic


By Dr Marie-Claire Grounds, Specialist Registrar, NHS Fife

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Patient and Carer Perspectives of Telephone Parkinson’s Clinic during the COVID-19 Pandemic

Grounds, M, Marrinan, S, Renton J. Liberton Hospital, NHS Lothian.

Introduction:

Liberton Hospital Parkinson’s Clinic provides a Consultant led service for people with Parkinson’s living in South Edinburgh and Midlothian. The clinic runs weekly with two Consultants and a Specialist Registrar. There are separate Parkinson’s Disease Nurse Specialist Clinics running in tandem. This team is part of the wider NHS Lothian Parkinson’s Service.

Following the onset of the COVID-19 pandemic, NHS Lothian recommended that there should be no face-to-face clinics for vulnerable patients, including those with Parkinson’s Disease. As a result, since March 2020, the Consultant led clinic has been running solely using telephone appointments. In order to better understand this experience for our patients and carers, we conducted a postal feedback questionnaire.

Method:

A patient feedback questionnaire was devised to collect both quantitative and qualitative data. The questionnaire comprised a set of 13 questions, for which the responders were asked to rate their experience from good to bad. The best score being ‘yes, definitely’, the worst ‘definitely not’. Four questions asked responders to specifically rate the format and experience of the telephone consultation. The remaining questions asked for ratings of the individual doctor. In addition, responders were given ‘white space questions’ asking to provide positive and negative comments of their experience of a telephone consultation, compared with being seen in hospital.

Following their clinic appointment, the questionnaire was sent out by post to patients and their carers. Voluntary respondents then completed the questionnaire anonymously, and returned it by post to the clinic secretaries.

Results:

In total 38 completed questionnaires were received.

Overall, respondents found the telephone consultation helpful. 95% answered ‘Yes, definitely’ or ‘Yes to some extent’ when asked directly ‘Did you find the consultation useful?’. When asked if they would prefer to be seen in person for every review, the majority, 68%, answered either ‘yes definitely’ or ‘yes to some extent’. However, 50% respondents felt that the telephone consultation was more useful than coming to hospital. In addition, 54% respondents would prefer some of their consultations to be done by telephone rather than face to face.

Feedback regarding individual clinicians was excellent, with 99% respondents answering with positive responses.

On review of the ‘white space’ comments, clear themes emerged.

Positive themes included not having to travel, feeling safer [in the context of the pandemic], and feeling more relaxed in their own home. The overall sense was that the telephone consultation was more convenient and less intimidating.

Direct quotes included:

  • “I felt more relaxed as I was in my own home.”

  • “The telephone conversations did save us having to be near other people and also having to find a parking space!”

  • “Whilst very informative the doctor did say that a one to one would more likely be needed for a diagnosis.”

  • “Would be happy to continue, perhaps alternate appointments.”

Negative themes focused on the lack of physical examination, with concern that signs may be missed, and the sense that it was less personal and lacking the nuances created by body language.

Direct quotes included:

  • “The doctor depended on our interpretation of my husband’s problem. The doctor would have a much clearer evaluation if she could see my husband moving and walking in a face to face consultation.”

  • “Only positive was not involving transport. Although I gained value from information I feel that it is important that the doctor has seen signs and how it follows expected progression of condition.”

  • “I missed the element of body language and facial expression which enhances the face to face meeting.”

  • “Personal involvement missing.”

Discussion:

Whilst a clear majority of survey participants felt that the telephone clinic had been useful, there was a dichotomy between feeling safe and not having to travel, whilst missing out on physical examination and a more personal face-to-face review. Interestingly half of responders would choose to continue with telephone consultations as some part of their ongoing follow up, with one comment suggesting they could be used for alternate appointments. It may be that the use of video consultations could enable better assessment of physical signs, and it could be worthwhile pursuing a trial of this technology to potentially enhance these virtual appointments.

For the time being telephone consultations are likely to continue for the majority of patients. However, NHS Lothian has recently given permission to open clinics for face-to-face review, where felt essential. These in-person clinic numbers will be curtailed to allow for social distancing. As such, we must consider which patients to prioritise for face-to-face review. Unfortunately, as the surveys were anonymous, we are unable to use the information collected to determine which particular patient groups would prefer in-person appointments. However, the open comments did provide a good insight into why one form of consultation was preferable. As such, the current consensus is to prioritise face-to-face review for all new patients and those with challenging motor symptoms.

This survey was an excellent way of engaging our patients and carers during this challenging time, allowing their voices to shape our ongoing service as we emerge from the pandemic. Continuing this proactive form of patient feedback regularly would enable services to respond to suggestions more readily.

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