The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Participants
2.3. Procedure
2.4. Analysis
3. Results
- Initial contact
- Initial referral
- Further referrals—provider
- Further referrals—private
- Diagnosis
3.1. Involved in the Diagnostic Process
‘I can’t understand when you go into a consultant, and you’ve got someone who’s got memory problems and speech problems, and yet the partner, the wife, isn’t allowed’. (Participant 1)
‘I turned up, I submitted myself to whatever they wanted to do. From an engineering point of view, I wasn’t part of the plan’. (Participant 2)
‘I’m always double-checking things now, if a referral has been made. And I’m ringing up and chasing’. (Participant 1)
‘Those who do not push hard enough will just drop into an abyss’. (Participant 4)
3.2. Disputes between Stakeholders
‘My wife wouldn’t co-operate. She wasn’t being bolshy or difficult, but she could not see why we wanted her to see a doctor’. (Participant 7)
‘But then, he rang back and said that he’d contacted the memory clinic and the memory clinic, had said that he is too young, to be referred to somewhere like that’. (Participant 1)
‘They wouldn’t come here to us. We have, and I have pleaded with them, look I can’t get him out and they’ve, no, he’s got to go, you’ve got to get him there’. (Participant 6)
‘The psychologist had said I’m going to pass him over as an urgent patient. And I heard nothing and when I rang to speak to the secretary to find out where he was on the list, they said, oh, the doctor said it’s not an emergency’. (Participant 6)
- Initial contact
- 2.
- Initial referral
Participant | Initial Referral (NHS/Private) | Health Service Activity | Unit Cost | Consultation Time (Minutes) | Travel Time (Minutes) | Opportunity Costs—Patient Consultation Time (£) | Opportunity Costs—Patient Travel Time (£) | Patient Funded Costs—Mileage (£0.45 per Mile) | Total Costs (£) |
---|---|---|---|---|---|---|---|---|---|
Participant 1 | NHS | CT scan | £70.00 | 60 | 20 | £8.91 | £2.97 | ** | £82 |
Participant 2 | NHS | MRI scan | £110.00 | 60 | ** | £8.91 | ** | ** | £119 |
Participant 3 | NHS | Ophthalmology follow-up appointment | £139.23 | 240 *** | 30 | £35.64 | £4.46 | ** | £179 |
Participant 4 | NHS | Community mental health nurse contact | £44.00 | 60 | ** | £8.91 | ** | ** | £53 |
Participant 5 | NHS | CT scan | £70.00 | 60 | ** | £8.91 | ** | ** | £79 |
Participant 6 | NHS | Community mental health nurse contact | £44.00 | 60 | ** | £8.91 | ** | £1.35 | £54 |
Participant 7 | NHS | Well woman appointment | £44.00 | 60 | ** | £8.91 | ** | ** | £53 |
Participant 8 | NHS | Memory clinic appointment | £528.00 | 60 | ** | £8.91 | ** | £6.30 | £543 |
Participant 9 | NHS | Psychiatrist consultation | £120.00 | 60 | ** | £8.91 | ** | £1.80 | £131 |
Participant 10 | NHS | CT scan | £70.00 | 60 | ** | £8.91 | ** | ** | £79 |
Totals: | £1239 | 780 | 50 | £116 | £7 | £9 | £1372 |
- 3.
- Further referrals—provider
- 4.
- Further referrals—private
‘Fortunately, he had a work cover on an insurance policy, which meant he could get a faster appointment with the neurologist…if we had to wait 18 months or more, you know, we still wouldn’t have known what was going on’. (Participant 5)
- 5.
- Diagnosis
‘I wish to stress that very clearly, I am very annoyed that I wasn’t given more information’. (Participant 8)
4. Discussion
Limitations of This Study
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
Q1. At the onset of symptoms, what did you feel was happening? Did you have any alternative explanations for the symptoms? |
Q2. Did you discuss your symptoms with anybody else prior to contacting services? e.g., family, friends, and colleagues |
Q3. Did the symptoms affect any of your relationships? Family relationships? Working relationships? |
Q4. Did the symptoms have any financial, or other, implications? |
Q5. Did you have any concerns about approaching health services to discuss your symptoms? e.g., concerns about stigma |
Q6. Who did you first approach regarding your concerns? (e.g., a health provider, social services, third sector organisation) Year? Language? If a health provider is the first contact, go to Q.8 |
Q7. How soon after this initial contact did you first have contact with health services regarding your concerns? Year? Language Length of appt? |
Q8. Did you feel confident the health service would be able to help you? |
Q9. During or immediately following this first contact with health services, were you referred to a diagnostic service? Year? If yes, go to Q.10 If no, go to Q.14 |
Q10. Which service were you referred to? e.g., Memory service, neurology, or psychology |
Q11. How long did you remain on a waiting list before being seen by the service? |
Q12. How far was the service geographically located from your home address? Request location of service if distance is unknown |
Q13. What mode of transport did you use to attend this service? Go to Q. 23 |
Q14. Did you need to make further contact with health services to initiate a referral to a diagnostic service? Year? |
Q15. How long did you have to wait between your initial contact with health services and a referral being made? |
Q.16 Who completed the referral to the diagnostic service when it happened? |
Q.17 Which service were you referred to? e.g., Memory service, neurology, or psychology |
Q.18 How long did you remain on a waiting list before being seen by the service? |
Q.19 How far was the service geographically located from your home address? Request location of service if distance is unknown |
Q20. What mode of transport did you use to attend this service? |
Q.21 Were you referred to any support services between the time of first contact and receiving your diagnosis? If YES, request the details of these services. Year? Sessions attended? |
Q.22 Have you at any point received an assessment of your needs as a carer? |
Q.23 How long did you wait for your diagnosis following your first contact with the diagnostic service? |
Q.24 How involved were you in the diagnostic process? |
Q.25 Who was the first to think this might be a rare dementia? |
Q. 26 If not by the professional, please specify how you/others came to think it was a rare dementia. |
Q.27 Who told you about the diagnosis? Year? Length of appt? |
Q.28 How much do you agree or disagree that you knew what was going to happen after the diagnosis? |
Q. 29 Do you think the diagnosis of dementia, for the person you care for, was delayed because of other pre-existing conditions? |
Q.30 Which conditions do you think delayed diagnosis? |
Q.31 Has the person you care for had any additional conditions diagnosed since their dementia diagnosis? |
Q.32 If applicable: Thinking about the additional condition(s), do you feel that the diagnosis was delayed, or complicated, due to the existing dementia diagnosis? |
Q. 33 Do you feel that the overall treatment of any additional conditions for the person with dementia has changed since their dementia diagnosis? |
Q.34 How did you feel about the way you were given your diagnosis? |
Q.35 How did you feel about the diagnosis? |
Q.36 What information were you given about the diagnosis? |
Q.37 As a carer, how would you rate the quality of information you have received from professionals since the diagnosis? |
Q38 Did you feel that you understood the diagnosis after the health provider explained what it was? |
Q.39 Were you and the person you care for able to have a practical conversation about the future following their dementia diagnosis? |
Q.40 Immediately following diagnosis, what interventions were discussed and/or initiated? Use the list below to support the participant in recalling these possible interventions. Medication Activities for the person living with rare dementia Carer support Befriending services Carer education Day services Cognitive stimulation therapy Cognitive rehabilitation Other |
Q41. When did you become aware of Rare Dementia Support? |
Q42. How did you become aware of Rare Dementia Support? |
Q.43 Since diagnosis, have you been referred to any other services? Use the list below to support the participant to recall these possible interventions. Medication Activities for the person living with rare dementia Carer support Befriending services Carer education Day services Cognitive stimulation therapy Cognitive rehabilitation Other |
Q.44 What support, if any, do you feel would have made the greatest difference to both you as a carer and the PLWD? |
Q.45 How much do you agree that the following are important in helping to manage the symptoms of dementia?
|
Q.46 Do you remain in contact with either the diagnostic service or another health provider regarding your rare dementia diagnosis? If yes, go to Q.47 If no, go to Q. 48 |
Q.47 How often do you have contact with this service and by what means? Use the list below to support the participant. Go to Q.52 Face-to-face appointments Telephone appointments Email appointments Other |
Q.48 If you require support from health services, do you know how to access this? |
Q.49 From your previous experiences, do you feel that support would be provided in a timely manner? |
Q.50 Overall, how would you describe your journey from the initial recognition of symptoms to receiving a diagnosis of a rare dementia? |
Q.51 Taking everything into account, how satisfied or dissatisfied are you with the support you have received since the diagnosis? |
Q.52 What changes would you suggest to services for people affected by rare dementia in Wales? |
Appendix B
Primary Care and Community-Based Consultations | Unit Cost | Source | Notes/Assumptions | Citation/Website Link |
GP consultation | £39.23 | PSSRU Unit costs of health and social care 2021 [44] | Including direct care staff costs and qualification costs | Jones KC, Burns A. Unit costs of health and social care 2021. p. 111 |
GP telephone call | £15.52 | PSSRU Unit costs of health and social care [44] | Cost per intervention. GP-led telephone triage. Cost per intervention, including other costs | Jones KC, Burns A. Unit costs of health and social care 2021. p.114 |
Community mental health nurse appointment | £44 | PSSRU Unit costs of health and social care [44] | Cost per working hour. Band 5 | Jones KC, Burns A. Unit costs of health and social care 2021. p.108 |
Well woman appointment | £44 | PSSRU Unit costs of health and social care [44] | Cost per working hour. Practice nurse. | Jones KC, Burns A. Unit costs of health and social care 2021. p.109 |
Community mental health nurse appointment | £44 | PSSRU Unit costs of health and social care [44] | Cost per working hour. Band 5 | Jones KC, Burns A. Unit costs of health and social care 2021. p.108 |
Hospital Attendances and Related Activity | Unit Cost | Source | Notes/Assumptions | |
Neurologist consultation | £120 | PSSRU Unit costs of health and social care [44] | Cost per working hour. Associate specialist. | Jones KC, Burns A. Unit costs of health and social care 2021. pp.139–141 |
Consultant neurologist consultation | £123 | PSSRU Unit costs of health and social care [44] | Cost per working hour. Consultant: medical | Jones KC, Burns A. Unit costs of health and social care 2021. pp.139–141 |
Ophthalmology appointment (first attendance) | £165.95 | National Schedule of NHS costs 2020-21 [45] | Currency code WF01B. Non-consultant led. Non-Admitted Face-to-Face Attendance, First. | https://www.england.nhs.uk/publication/2020-21-national-cost-collection-data-publication/ (accessed on 1 November 2023) |
Ophthalmology appointment (follow-up) | £139.23 | National Schedule of NHS costs 2020-21 [45] | Currency code WF01A. Non-consultant led. Non-Admitted Face-to-Face Attendance, Follow-up. | https://www.england.nhs.uk/publication/2020-21-national-cost-collection-data-publication/ (accessed on 1 November 2023) |
CT scan | £70 | NHS National tariff workbook 2020/21 (Annex A). [46] | HRG code: RD20A. Computerised Tomography Scan of One Area, without contrast, 19 years and over. NHS and private investigations (CT, MRI, and SPECT scans) were assumed to last 60 min [47] | https://www.england.nhs.uk/wp-content/uploads/2021/02/20-21NT_Annex_A_National_tariff_workbook.xlsx (accessed on 1 November 2023) https://www.cuh.nhs.uk/patient-information/information-for-patients-who-are-having-a-ct-scan/ (accessed on 1 November 2023) |
MRI scan | £110 | NHS National Tariff Workbook 2020/21 (Annex A). [46] | HRG code: RD01A. Magnetic Resonance Imaging Scan of One Area, without contrast, 19 years and over. NHS and private investigations (CT, MRI, and SPECT scans) were assumed to last 60 min [47] | https://www.england.nhs.uk/wp-content/uploads/2021/02/20-21NT_Annex_A_National_tariff_workbook.xlsx (accessed on 1 November 2023) https://www.cuh.nhs.uk/patient-information/information-for-patients-who-are-having-a-ct-scan/ (accessed on 1 November 2023) |
SPECT scan | £243.16 | National Schedule of NHS costs 2020/21 [45] | Currency code: RN08A. Single Photon Emission Computed Tomography (SPECT), 19 years and over. NHS and private investigations (CT, MRI, and SPECT scans) were assumed to last 60 min [47] | https://www.england.nhs.uk/publication/2020-21-national-cost-collection-data-publication/ (accessed on 1 November 2023) https://www.cuh.nhs.uk/patient-information/information-for-patients-who-are-having-a-ct-scan/ (accessed on 1 November 2023) |
Memory service appointment | £528 | PSSRU Unit costs of health and social care [44] | Total cost per hour. | Jones KC, Burns A. Unit costs of health and social care 2021. p.28 |
Memory service telephone call | £8.67 | See notes. PSSRU Unit costs of health and social care [44] | No cost data available—costed as GP telephone call in response to e-consultation. | Jones KC, Burns A. Unit costs of health and social care 2021. p.28 |
Psychologist consultation | £65.00 | PSSRU Unit costs of health and social care [44] | Cost per working hour. Band 7 clinical psychologist. | Jones KC, Burns A. Unit costs of health and social care 2021. pp.102–104 |
Psychiatrist consultation | £120 | PSSRU Unit costs of health and social care [44] | Per working hour. Associate specialist. | Jones KC, Burns A. Unit costs of health and social care 2021. pp.139–141 |
Consultant psychologist consultation | £120 | PSSRU Unit costs of health and social care [44] | Clinical psychologist consultant (Band 8d) | Jones KC, Burns A. Unit costs of health and social care 2021. pp.133–135 |
Consultation psychiatrist consultation | £123 | PSSRU Unit costs of health and social care [44] | Cost per working hour for consultant psychiatric | Jones KC, Burns A. Unit costs of health and social care 2021. p.141 |
Psychiatrist phone call | £8.67 | See notes. PSSRU Unit costs of health and social care [44] | No cost data available—costed as GP telephone call in response to e-consultation. | Jones KC, Burns A. Unit costs of health and social care 2021. p.28 |
Psychologist home visit | £65.00 | See notes. PSSRU Unit costs of health and social care [44] | No unit cost data available. Costed as psychologist cost per working hour | Jones KC, Burns A. Unit costs of health and social care 2021. pp.102–104 |
Private Consultations | Unit Cost | Source | Notes/Assumptions | Link |
Neurologist and consultant neurologist consultation | £250 | Nuffield Health Hospital guide price [48] | 30-min appointment. Nuffield Health—Nuffield Health Grosvenor (Chester) Hospital consultation price | https://www.nuffieldhealth.com/consultants?size=n_20_n&sort-field=sortname&sort-direction=asc (accessed on 1 November 2023) |
Neurologist online consultation (Zoom) | £250 | See notes section. Nuffield Health hospital guide price [48] | No data cost data available. Costed as neurologist face-to-face consultation | https://www.nuffieldhealth.com/consultants?size=n_20_n&sort-field=sortname&sort-direction=asc (accessed on 1 November 2023) |
MRI scan | £395 | Nuffield Health—Cardiff and Vale hospital guide price [48] | MRI scan (1 part). Price includes pre-assessment, main treatment, and post-discharge care. Initial consultation from £0. All scans assumed to last 60 min [47] | https://www.nuffieldhealth.com/hospitals/cardiff-and-vale/pricing (accessed on 1 November 2023) https://www.cuh.nhs.uk/patient-information/information-for-patients-who-are-having-a-ct-scan/ (accessed on 1 November 2023). |
CT scan | £695 | Nuffield Health—Cardiff and Vale hospital guide price [48] | CT scan (1 part). Price includes pre-assessment, main treatment, and post-discharge care. Initial consultation from £0. All scans were assumed to last 60 min [47] | https://www.nuffieldhealth.com/hospitals/cardiff-and-vale/pricing (accessed on 1 November 2023) https://www.cuh.nhs.uk/patient-information/information-for-patients-who-are-having-a-ct-scan/ (accessed on 1 November 2023) |
Optician—eye test | £25 | Specsavers prices [49] | Per eye test. Private eye tests were assumed to last 30 min [50] | https://www.specsavers.co.uk/help-and-faqs/how-much-is-an-eye-test (accessed on 1 November 2023) The College of Optometrists. https://lookafteryoureyes.org/eye-examinations/the-eye-examination/#:~:text=The%20eye%20examination%20usually%20takes,your%20general%20health (accessed on 1 November 2023) |
Medications | Name Given in BNF | Active Ingredient | Dose | Size | Unit | Cost per Item | Cost per Unit | Source | Notes |
Levodepa | Co-careldopa 25 mg/100 mg tablets | Co-careldopa (Carbidopa/levodopa) | 3 tablet per day | 1 | Tablet | £20.42 | £0.19 | PCA 2020-21 [51] | BNF presentation code: 0409010N0AAABAB. Drugs used in parkinsonism and related disorders. At first, 25 milligrams (mg) of carbidopa and 100 mg levodopa (1 tablet) 3 times a day. |
Donepezil | Donepezil 5 mg tablets | Donepezil hydrochloride | 1 tablet per day | 1 | Tablet | £0.99 | £0.04 | PCA 2020-21 [51] | BNF presentation code: 0411000D0AAAAAA. Dementia medication, 5 mg per day |
Other (Patient Costs) | Unit | Cost | Details | Cost Year | Source | Notes | Conversion | Inflation |
Mileage | Mile | £0.45 | NA | 2021 | HMRC Mileage rates [52] | Travel—mileage and fuel rates and allowances https://www.gov.uk/government/publications/rates-and-allowances-travel-mileage-and-fuel-allowances/travel-mileage-and-fuel-rates-and-allowances (accessed on 8 October 2023) | NA | NA |
Opportunity costs—loss of earnings (base case analysis) | Hourly rate | £8.91 | National Living Wage for workers ages 23 and over | 2021 | [34] | Welsh Government (2021) https://www.gov.uk/national-minimum-wage-rates (accessed on 22 June 2023) | NA | NA |
Opportunity costs—lost leisure time (sensitivity analysis) | Per hour | 16 Euros | An hour of leisure time lost valued at 16 Euro in cost year 2014 | 2014 | [35] | Verbooy, K., Hoefman, R., Van Exel, J. and Brouwer, W., 2018. Time is money: investigating the value of leisure time and unpaid work. Value in Health, 21(12), pp.1428–1436. | Converted to £13.26 in 2014 using the International Monetary Fund. | Inflated to £14.82 using Curtis NHSCII Pay & Prices |
(na) Not applicable. |
Appendix C
Participant | Initial Contact (NHS/Private) | Health Service Activity | Unit Cost: | Consultation Time (Minutes) | Travel Time (Minutes) | Opportunity Costs—Patient Consultation Time (£) | Opportunity Costs—Patient Travel Time (£) | Patient Funded Costs—Mileage (£0.45 per Mile) | Total Costs (£) |
---|---|---|---|---|---|---|---|---|---|
Participant 1 | NHS | GP consultation | £39.23 | 9.22 | ** | £2.28 | ** | ** | £41.51 |
Participant 2 | NHS | Neurologist consultation | £120 | 60 | ** | £14.82 | ** | ** | £134.82 |
Participant 3 | NHS | Ophthalmology appointment | £165.95 | 480 *** | 30 | £118.56 | £7.41 | ** | £291.92 |
Participant 4 | Private | Consultant neurologist appointment | £250 | 30 | ** | £7.41 | ** | ** | £257.41 |
Participant 5 | NHS | GP consultation | £39.23 | 9.22 | ** | £2.28 | ** | ** | £41.51 |
Participant 6 | NHS | GP consultation | £39.23 | 9.22 | ** | £2.28 | ** | £1.35 | £42.86 |
Participant 7 | NHS | GP consultation | £39.23 | 9.22 | ** | £2.28 | ** | ** | £41.51 |
Participant 8 | NHS | GP consultation | £39.23 | 9.22 | ** | £2.28 | ** | ** | £41.51 |
Participant 9 | NHS | GP consultation | £39.23 | 9.22 | ** | £2.28 | ** | ** | £41.51 |
Participant 10 | NHS | GP consultation | £39.23 | 9.22 | ** | £2.28 | ** | ** | £41.51 |
Total cost for NHS consultations: | £561 | ||||||||
Total cost for private consultations: | £250 | ||||||||
Totals: | £811 | 634.54 | 30 | £156.75 | £7.41 | £1.35 | £976 |
Participant | Initial Referral (NHS/Private) | Health Service Activity | Unit Cost | Consultation Time (Minutes) | Travel Time (Minutes) | Opportunity Costs—Patient Consultation Time (£) | Opportunity Costs—Patient Travel Time (£) | Patient Funded Costs—Mileage (£0.45 per Mile) | Total Costs (£) |
---|---|---|---|---|---|---|---|---|---|
Participant 1 | NHS | CT scan | £70.00 | 60 | 20 | £14.82 | £4.94 | ** | £90 |
Participant 2 | NHS | MRI scan | £110.00 | 60 | ** | £14.82 | ** | ** | £125 |
Participant 3 | NHS | Ophthalmology follow-up appointment | £139.23 | 240 *** | 30 | £59.28 | £7.41 | ** | £206 |
Participant 4 | NHS | Community mental health nurse contact | £44.00 | 60 | ** | £14.82 | ** | ** | £59 |
Participant 5 | NHS | CT scan | £70.00 | 60 | ** | £14.82 | ** | ** | £85 |
Participant 6 | NHS | Community mental health nurse contact | £44.00 | 60 | ** | £14.82 | ** | £1.35 | £60 |
Participant 7 | NHS | Well woman appointment | £44.00 | 60 | ** | £14.82 | ** | ** | £59 |
Participant 8 | NHS | Memory clinic appointment | £528.00 | 60 | ** | £14.82 | ** | £6.30 | £549 |
Participant 9 | NHS | Psychiatrist consultation | £120.00 | 60 | ** | £14.82 | ** | £1.80 | £137 |
Participant 10 | NHS | CT scan | £70.00 | 60 | ** | £14.82 | ** | ** | £85 |
Totals: | £1239 | 780 | 50 | £193 | £12.35 | £9.45 | £1454 |
Participant | Health Service Activity | Unit Cost | Consultation Time (Minutes) | Travel Time (Minutes) | Opportunity Costs—Patient Consultation Time (£) | Opportunity Costs—Patient Travel Time (£) | Patient Funded Costs—Mileage (£0.45 per Mile) | Total Costs (£) |
---|---|---|---|---|---|---|---|---|
Participant 1 | GP telephone call | £15.52 | ** | na | ** | na | na | £16 |
Memory service telephone call | £8.67 | ** | na | ** | na | na | £9 | |
Consultation neurologist consultation | £123.00 | 60 | ** | £14.82 | ** | ** | £138 | |
Participant 2 | Psychologist consultation | £65.00 | 60 | ** | £14.82 | ** | ** | £80 |
Memory service appointment (June 2015) | £528.00 | 60 | 40 | £14.82 | £9.88 | ** | £553 | |
Memory service appointments x12 (December 2015–June 2021) | £6336.00 | 720 | 480 | £177.84 | £118.56 | ** | £6632 | |
SPECT scan | £243.16 | 60 | 120 | £14.82 | £29.64 | ** | £288 | |
MRI scan | £110.00 | 60 | 120 | £14.82 | £29.64 | ** | £154 | |
Consultation with consultant psychologist and consultant psychiatrist | £243.00 | 60 | 40 | £14.82 | £9.88 | ** | £268 | |
Participant 3 | MRI scan | £110.00 | 60 | ** | £14.82 | ** | ** | £125 |
Ophthalmology appointment (follow-up) | £139.23 | 60 | 30 | £14.82 | £7.41 | ** | £161 | |
Ophthalmology appointment (follow-up) | £139.23 | 60 | 30 | £14.82 | £7.41 | ** | £161 | |
GP consultation | £39.23 | 9.22 | ** | £2.28 | ** | ** | £42 | |
Neurologist consultation | £120.00 | 60 | 30 | £14.82 | £7.41 | ** | £142 | |
Participant 4 | Levadopa. Parkinsons medication (2-week trial) | £7.98 | na | na | na | na | na | £8 |
Neurologist consultation | £120.00 | 60 | 120 | £14.82 | £29.64 | ** | £164 | |
Participant 5 | - | - | - | - | - | - | - | - |
Participant 6 | GP consultation | £39.23 | 9.22 | ** | £2.28 | ** | £1.35 | £43 |
Psychologist consultation | £65.00 | 60 | ** | £14.82 | ** | £6.30 | £86 | |
MRI scan | £110.00 | 60 | ** | £14.82 | ** | £7.20 | £132 | |
Psychiatrist consultation | £120.00 | 60 | ** | £14.82 | ** | £7.20 | £142 | |
Psychiatrist phone call | £8.67 | ** | na | ** | na | na | £9 | |
Participant 7 | Psychiatrist consultation | £120.00 | 60 | ** | £14.82 | ** | ** | £135 |
MRI scan | £110.00 | 60 | ** | £14.82 | ** | £39.60 | £164 | |
Psychiatrist consultation | £120.00 | 60 | 10 | £14.82 | £2.47 | ** | £137 | |
Mental health nurse | £41.00 | 60 | ** | £14.82 | ** | ** | £56 | |
Donepezil 5 mg (1 day) | £0.04 | na | na | na | na | na | £0 | |
Psychiatrist phone call | £8.67 | ** | na | ** | na | na | £9 | |
Participant 8 | CT scan | £70.00 | 60 | ** | £14.82 | ** | ** | £85 |
Consultant psychiatrist consultation | £123.00 | 60 | ** | £14.82 | ** | £8.10 | £146 | |
Participant 9 | Psychologist consultation | £65.00 | 60 | ** | £14.82 | ** | ** | £80 |
Psychologist consultation | £65.00 | 60 | ** | £14.82 | ** | ** | £80 | |
Psychiatrist consultation (x8) | £960.00 | 480 | ** | £118.56 | ** | £14.40 | £1093 | |
Psychologist home visit (2 h) | £130.00 | 120 | ** | £29.64 | ** | ** | £160 | |
MRI scan | £110.00 | 60 | ** | £14.82 | ** | ** | £125 | |
Psychiatrist consultation | £120.00 | 60 | ** | £14.82 | ** | £1.80 | £137 | |
Participant 10 | Neurologist consultation | £120.00 | 60 | ** | £14.82 | ** | ** | £135 |
Totals: | £10,854 | 2838 | 1020 | £701 | £252 | £86 | £11,893 |
Participant | Health Service Activity | Unit Cost | Consultation Time (Minutes) | Travel Time (Minutes) | Opportunity Costs—Patient Consultation Time (£) | Opportunity Costs—Patient Travel Time (£) | Patient Funded Costs—Mileage (£0.45 per Mile) | Total Costs (£) |
---|---|---|---|---|---|---|---|---|
Participant 1 | Neurologist consultation | £250 | 30 | 120 | £7.41 | £29.64 | ** | £287 |
MRI scan | £395 | 60 | 120 | £14.82 | £29.64 | ** | £439 | |
Neurologist online consultation (Zoom) | £250 | 30 | na | £7.41 | na | na | £257 | |
Participant 2 | - | - | - | - | - | - | - | - |
Participant 3 | Optician eye test ×2 | £50 | 60 | ** | £14.82 | ** | ** | £65 |
Optician eye test ×2 | £50 | 60 | ** | £14.82 | ** | ** | £65 | |
Participant 4 | - | - | - | - | - | - | - | - |
Participant 5 | Neurologist consultation | £250 | 30 | ** | £7.41 | ** | £10.80 | £268 |
Neurologist consultation | £250 | 30 | ** | £7.41 | ** | £10.80 | £268 | |
Participant 6 | CT scan | £695 | 60 | ** | £14.82 | ** | £7.20 | £717 |
Participant 7 | - | - | - | - | - | - | - | - |
Participant 8 | - | - | - | - | - | - | - | - |
Participant 9 | - | - | - | - | - | - | - | - |
Participant 10 | Neurologist consultation | £250 | 30 | ** | £7.41 | ** | ** | £257 |
Totals: | £2440 | 390 | 240 | £96 | £59 | £29 | £2624 |
Patient | NHS Costs | Patient Funded Costs—Private Consultations | Travel Time (Minutes) | Consultation Time (Minutes) | Opportunity Costs—Travel Time | Opportunity Costs—Patient Consultation Time | Patient Funded Costs—Mileage | Total |
---|---|---|---|---|---|---|---|---|
Participant 1 | £256.42 | £895 | 260 | 249.22 | £64.22 | £61.56 | ** | £1277 |
Participant 2 | £7755.16 | £0 | 800 | 1140 | £197.60 | £281.58 | ** | £8234 |
Participant 3 | £852.87 | £100 | 150 | 1089.22 | £37.05 | £269.04 | ** | £1259 |
Participant 4 | £171.98 | £250 | 120 | 150 | £29.64 | £37.05 | ** | £489 |
Participant 5 | £109.23 | £500.00 | ** | 129.22 | ** | £31.92 | £21.60 | £663 |
Participant 6 | £426.13 | £695.00 | ** | 318.44 | ** | £78.66 | £31.95 | £1232 |
Participant 7 | £482.94 | £0.00 | 10 | 309.22 | £2.47 | £76.38 | £39.60 | £601 |
Participant 8 | £760.23 | £0.00 | ** | 189.22 | ** | £46.74 | £14.40 | £821 |
Participant 9 | £1609.23 | £0.00 | ** | 909.22 | ** | £224.58 | £18.00 | £1852 |
Participant 10 | £229.23 | £250.00 | ** | 159.22 | £0.00 | £39.33 | £0.00 | £519 |
Total | £12,653 | £2690 | 1340 | 4643 | £331 | £1147 | £126 | £16,947 |
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Participant | Initial Contact (NHS/Private) | Health Service Activity | Unit Cost | Consultation Time (Minutes) | Travel Time (Minutes) | Opportunity Costs—Patient Consultation Time (£) | Opportunity Costs—Patient Travel Time (£) | Patient Funded Costs—Mileage (£0.45 per Mile) | Total Costs (£) |
---|---|---|---|---|---|---|---|---|---|
Participant 1 | NHS | GP consultation | £39.23 | 9.22 | ** | £1.37 | ** | ** | £41 |
ParticipantT 2 | NHS | Neurologist consultation | £120.00 | 60 | ** | £8.91 | ** | ** | £129 |
Participant 3 | NHS | Ophthalmology appointment | £165.95 | 480 *** | 30 | £71.28 | £4.46 | ** | £242 |
Participant 4 | Private | Consultant neurologist appointment | £250.00 | 30 | ** | £4.46 | ** | ** | £254 |
Participant 5 | NHS | GP consultation | £39.23 | 9.22 | ** | £1.37 | ** | ** | £41 |
Participant 6 | NHS | GP consultation | £39.23 | 9.22 | ** | £1.37 | ** | £1.35 | £42 |
Participant 7 | NHS | GP consultation | £39.23 | 9.22 | ** | £1.37 | ** | ** | £41 |
Participant 8 | NHS | GP consultation | £39.23 | 9.22 | ** | £1.37 | ** | ** | £41 |
Participant 9 | NHS | GP consultation | £39.23 | 9.22 | ** | £1.37 | ** | ** | £41 |
Participant 10 | NHS | GP consultation | £39.23 | 9.22 | ** | £1.37 | ** | ** | £41 |
Total cost for NHS consultations: | £561 | ||||||||
Total cost for private consultations: | £250 | ||||||||
Totals: | £811 | 635 | 30 | £94 | £4 | £1 | £911 |
Participant | Health Service Activity | Unit Cost | Consultation Time (Minutes) | Travel Time (Minutes) | Opportunity Costs—Patient Consultation Time (£) | Opportunity Costs—Patient Travel Time (£) | Patient Funded Costs—Mileage (£0.45 per Mile) | Total Costs (£) |
---|---|---|---|---|---|---|---|---|
Participant 1 | GP telephone call | £15.52 | ** | na | ** | na | na | £16 |
Memory service telephone call | £8.67 | ** | na | ** | na | na | £9 | |
Consultant neurologist consultation | £123.00 | 60 | ** | £8.91 | ** | ** | £132 | |
Participant 2 | Psychologist consultation | £65.00 | 60 | ** | £8.91 | ** | ** | £74 |
Memory service appointment (June 2015) | £528.00 | 60 | 40 | £8.91 | £5.94 | ** | £543 | |
Memory service appointments ×12 (Dec 2015–June 2021) | £6336.00 | 720 | 480 | £106.92 | £71.28 | ** | £6514 | |
SPECT scan | £243.16 | 60 | 120 | £8.91 | £17.82 | ** | £270 | |
MRI scan | £110.00 | 60 | 120 | £8.91 | £17.82 | ** | £137 | |
Consultation with consultant Psychologist and consultant Psychiatrist | £243.00 | 60 | 40 | £8.91 | £5.94 | ** | £258 | |
ParticipantT 3 | MRI scan | £110.00 | 60 | ** | £8.91 | ** | ** | £119 |
Ophthalmology appointment (follow-up) | £139.23 | 60 | 30 | £8.91 | £4.46 | ** | £153 | |
Ophthalmology appointment (follow-up) | £139.23 | 60 | 30 | £8.91 | £4.46 | ** | £153 | |
GP consultation | £39.23 | 9.22 | ** | £1.37 | ** | ** | £41 | |
Neurologist consultation | £120.00 | 60 | 30 | £8.91 | £4.46 | ** | £133 | |
Participant 4 | Levadopa Parkinson’s medication (2-week trial) | £7.98 | na | na | na | na | ** | £8 |
Neurologist consultation | £120.00 | 60 | 120 | £8.91 | £17.82 | ** | £147 | |
Participant 5 | - | - | - | - | - | - | - | - |
Participant 6 | GP consultation | £39.23 | 9.22 | ** | £1.37 | ** | £1.35 | £42 |
Psychologist consultation | £65.00 | 60 | ** | £8.91 | ** | £6.30 | £80 | |
MRI scan | £110.00 | 60 | ** | £8.91 | ** | £7.20 | £126 | |
Psychiatrist consultation | £120.00 | 60 | ** | £8.91 | ** | £7.20 | £136 | |
Psychiatrist phone call | £8.67 | ** | na | ** | na | na | £9 | |
Participant 7 | Psychiatrist consultation | £120.00 | 60 | ** | £8.91 | ** | ** | £129 |
MRI scan | £110.00 | 60 | ** | £8.91 | ** | £39.60 | £159 | |
Psychiatrist consultation | £120.00 | 60 | 10 | £8.91 | £1.49 | ** | £130 | |
Mental health nurse | £41.00 | 60 | ** | £8.91 | ** | ** | £50 | |
Donepezil 5 mg (1 day) | £0.04 | na | na | na | na | na | £0 | |
Psychiatrist phone call | £8.67 | ** | na | ** | na | na | £9 | |
Participant 8 | CT scan | £70.00 | 60 | ** | £8.91 | ** | ** | £79 |
Consultant Psychiatrist consultation | £123.00 | 60 | ** | £8.91 | ** | £8.10 | £140 | |
Participant 9 | Psychologist consultation | £65.00 | 60 | ** | £8.91 | ** | ** | £74 |
Psychologist consultation | £65.00 | 60 | ** | £8.91 | ** | ** | £74 | |
Psychiatrist consultation (×8) | £960.00 | 480 | ** | £71.28 | ** | £14.40 | £1046 | |
Psychologist home visit (2 h) | £130.00 | 120 | ** | £17.82 | ** | ** | £148 | |
MRI scan | £110.00 | 60 | ** | £8.91 | ** | ** | £119 | |
Psychiatrist consultation | £120.00 | 60 | ** | £8.91 | ** | £1.80 | £131 | |
Participant 10 | Neurologist consultation | £120.00 | 60 | ** | £8.91 | ** | ** | £129 |
Totals: | £10,854 | 2838 | 1020 | £422 | £151 | £86 | £11,513 |
Participant | Health Service Activity | Unit Cost | Consultation Time (Minutes) | Travel Time (Minutes) | Opportunity Costs—Patient Consultation Time (£) | Opportunity Costs—Patient Travel Time (£) | Patient Funded Costs—Mileage (£0.45 per Mile) | Total Costs (£) |
---|---|---|---|---|---|---|---|---|
Participant 1 | Neurologist consultation | £250 | 30 | 120 | £4.46 | £17.82 | ** | £272 |
MRI scan | £395 | 60 | 120 | £8.91 | £17.82 | ** | £422 | |
Neurologist online consultation (Zoom) | £250 | 30 | na | £4.46 | na | na | £254 | |
Participant 2 | - | - | - | - | - | - | - | - |
Participant 3 | Optician eye test ×2 | £50 | 60 | ** | £8.91 | ** | ** | £59 |
Optician eye test ×2 | £50 | 60 | ** | £8.91 | ** | ** | £59 | |
Participant 4 | - | - | - | - | - | - | - | - |
Participant 5 | Neurologist consultation | £250 | 30 | ** | £4.46 | ** | £10.80 | £265 |
Neurologist consultation | £250 | 30 | ** | £4.46 | ** | £10.80 | £265 | |
Participant 6 | CT scan | £695 | 60 | ** | £8.91 | ** | £7.20 | £711 |
Participant 7 | - | - | - | - | - | - | - | - |
Participant 8 | - | - | - | - | - | - | - | - |
Participant 9 | - | - | - | - | - | - | - | - |
Participant 10 | Neurologist consultation | £250 | 30 | ** | £4.46 | ** | ** | £254 |
Totals: | £2440 | 390 | 240 | £58 | £36 | £29 | £2562 |
Patient | NHS Costs (£) | Patient Funded Costs—Private Consultations (£) | Travel Time (Minutes) | Consultation Time (Minutes) | Opportunity Costs—Travel Time (£) | Opportunity Costs—Patient Consultation Time (£) | Patient Funded Costs—Mileage (£) | Total Costs (£) |
---|---|---|---|---|---|---|---|---|
Participant 1 | £256.42 | £895.00 | 260 | 249.22 | £38.61 | £37.02 | ** | £1227 |
Participant 2 | £7755.16 | £0.00 | 800 | 1140 | £118.80 | £169.29 | ** | £8043 |
Participant 3 | £852.87 | £100.00 | 150 | 1089.22 | £22.30 | £161.75 | ** | £1137 |
Participant 4 | £171.98 | £250.00 | 120 | 150 | £17.82 | £22.28 | ** | £462 |
Participant 5 | £109.23 | £500.00 | ** | 129 | ** | £19.20 | £21.60 | £650 |
Participant 6 | £426.13 | £695.00 | ** | 318 | ** | £47.29 | £31.95 | £1200 |
Participant 7 | £482.94 | £0.00 | 10 | 309.22 | £1.49 | £45.92 | £39.60 | £570 |
Participant 8 | £760.23 | £0.00 | ** | 189.22 | ** | £28.10 | £14.40 | £803 |
Participant 9 | £1609.23 | £0.00 | ** | 909.22 | ** | £135.02 | £18.00 | £1762 |
Participant 10 | £229.23 | £250.00 | ** | 159.22 | ** | £23.65 | ** | £503 |
Total | £12,653 | £2690 | 1340 | 4643 | £199 | £690 | £126 | £16,357 |
Resource Use | Number of Participants Reporting Resource Use | Total Cost | Total Number of Resource Use Items Reported by Participants | Lowest Cost Resource Use Item Reported | Highest Cost Resource Use Item Reported | Mean Cost of Service Use Items Reported | Standard Deviation (SD) |
---|---|---|---|---|---|---|---|
Initial contact—NHS | 9 | £561 | 9 | GP consultation (£39.23) | Ophthalmology appointment (£165.95) | £62.28 | 47.17 |
Initial contact—Private | 1 | £250 | 1 | na | na | na | na |
Initial referral—NHS | 10 | £1239 | 10 | Community mental health nurse contact (£44) | Memory clinic appointment (£528) | £123.92 | 145.91 |
Initial referral—Private | 0 | na | na | na | na | na | na |
Further referrals/activity—NHS | 9 | £10,854 | 54 | Donepezil 5 mg (£0.04) | Memory clinic appointment (£528) | £201 | 191.83 |
Further referrals/activity—Private | 5 | £2440 | 11 | Optician eye test (£25) | CT scan (£695) | £222 | 203.18 |
Total NHS resource use across pathways | 10 | £12,653 | 73 | Donepezil 5 mg (£0.04) | Memory clinic appointment (£528) | £173.33 | 180.14 |
Total privately funded resource use across pathways | 6 | £2690 | 12 | Optician eye test (£25) | CT scan (£695) | £224 | 193.89 |
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Davies-Abbott, I.; Anthony, B.F.; Jackson, K.; Windle, G.; Edwards, R.T., on behalf of the Rare Dementia Support (RDS) Research Team. The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses. Int. J. Environ. Res. Public Health 2024, 21, 231. https://doi.org/10.3390/ijerph21020231
Davies-Abbott I, Anthony BF, Jackson K, Windle G, Edwards RT on behalf of the Rare Dementia Support (RDS) Research Team. The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses. International Journal of Environmental Research and Public Health. 2024; 21(2):231. https://doi.org/10.3390/ijerph21020231
Chicago/Turabian StyleDavies-Abbott, Ian, Bethany F. Anthony, Kiara Jackson, Gill Windle, and Rhiannon Tudor Edwards on behalf of the Rare Dementia Support (RDS) Research Team. 2024. "The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses" International Journal of Environmental Research and Public Health 21, no. 2: 231. https://doi.org/10.3390/ijerph21020231