Understanding attitudes towards THE CLINICAL FRAILTY SCALE
What people with pulmonary hypertension, and their caregivers, think about this potential new way of measuring the impact of the disease...
Valuing the opinions of the PH community...
This online survey was conducted by the PHA UK in April 2024. It was sent to members of the charity’s Research Forum (a panel of patients and caregivers who have signed up to receive surveys) and promoted on Facebook. There were separate links for patients and caregivers (asking the same questions). 54 responses were received in total. This report presents both the statistics and the free text comments left by responders.
The Clinical Frailty Scale is already used around the world in some other health conditions, including chronic obstructive pulmonary disease (COPD). It assigns a ‘score’ to a patient based on defined descriptions of activity and functional status. The patient is observed and asked about areas including mobility, balance, use of walking aids, and the ability to carry out daily activities such as dressing, eating, shopping, and cooking. This score is then used by healthcare professionals to guide patient care by helping them make decisions about treatment pathways NHS England describes frailty as a loss of resilience that means people don’t bounce back quickly after a physical or mental illness, an accident, or other stressful event. The scale is used across all age groups (although most often in those over 65).
Most people with PH in the UK will be familiar with EmPHasis-10 – a questionnaire that’s used in clinical care to measure the impact of pulmonary hypertension on someone’s quality of life, and help guide decisions around treatments and their impact on this.
Our aim with this survey was to explore whether the ‘clinical frailty scale’ could also be useful as a way of helping patients describe how PH is affecting them. After all, frailty cannot be measured by a blood test or scan, so the scale could be another way to give patients a voice.
This survey forms part of a pioneering new research project to provide insight into what it’s like to live with PH over a period of time - helping us to see people in ‘ high definition’ - and we’re grateful to everyone who took the time to complete it.
Iain Armstrong Chair, PHA UK
responses received
PATIENT THOUGHTS 50
92% of respondents were female (8% male)
Respondents had the following types of PH: 46% Idiopathic Pulmonary Arterial Hypertension (IPAH) 10% Chronic Thromboembolic Pulmonary Hypertension (CTEPH)
20% Pulmonary Hypertension in association with Congenital Heart Disease 4% Heritable Pulmonary Arterial Hypertension (HPAH)
6% Pulmonary Hypertension in association with Systemic Sclerosis
6% Pulmonary Hypertension due to lung diseases
2% ‘Other type of PH’ 6% ‘I don’t know what type of PH I have’
74% of respondents had been diagnosed with PH for more than 2 years
12% Less than 6 months
2% 6-12 months
12% 1-2 years
80%
of respondents thought the clinical frailty scale should be completed by the patient and the healthcare professional together.
20% thought it should be completed by the patient alone. No-one thought it should be completed only by the healthcare professional.
I think it’s a great idea but would ask you to consider changing its name, no one likes to think of themselves as frail.
The survey asked respondents to identify how they would feel about the frailty scale being used as part of their assessment into how PH is affecting them. Presenting a list of statements, it asked them to choose which of them they relate to or agree with:
55%
“I think the frailty score would help describe how PH is impacting on me”
25%
“The world ‘frailty’ makes me feel uncomfortable”
53%
“I do not have concerns or reservations about a frailty score being used as part of my care”
6%
“I have concerns or reservations about a frailty score being used as part of my care”
33%
“I don’t think the word ‘frailty’ describes me”
31%
“I think it would be helpful for the frailty score to be completed at every appointment with my PH team”
Presenting the clinical frailty scale itself, the survey asked respondents to indicate where they would place themselves on it at that moment in time. These were the scores chosen:
It can be difficult to assess oneself, but this does give rather more detail than the assessment I normally complete.
More comments received about the clinical frailty scale and its potential use in the care of people with PH:
I think it’s a good idea to find out how active or not patients are as this has a great impact on their wellbeing alongside the medications we take.
Being an older person it is difficult to separate in one’s mind if the fragility is PH or older age.
I think it’s a good idea as it gives a more rounder look at the patient’s general health.
I don’t actually think any describe me, I chose the best fit.
I associate ‘frailty’ with older people. I didn’t know there was the possibility that this scale could be used for PH. Is it not similar to the class 1-4 scale that’s already used? Although it is more descriptive. I think it would need to be modified (pictures of older people with frames etc) and altered to become acceptable for PH patients. I would never use the world frail to describe myself even on my very worst day!
I really don’t like the descriptors used and feel that it is clearly designed for healthcare professionals to complete. I do think that when I was uneducated for PH frail would have been an excellent word to describe me.
I think it’s a good idea as it gives patients a chance to clarify their needs in a more detailed way, which then helps with their care. I don’t have any issues with the word frail or term frailty, especially when used to describe carrying out daily activities etc. Thank you for carrying out this survey, I hope the frailty score can be adapted in some way within the care of people with PH.
I think it could help monitor how your PH is progressing. I’d like for my partner to also be able to complete this (he’s my carer). Personally I think I’ve moved from a 7 to a 6. I’d like to think that if I can continue to improve I will be able to move up the scale. Think this would help the PH team see other improvements (or deterioration) and if it coincides with the test results.
Wellness score would be a better term. Yes, I think it is an important part of the treatment plan.
This frailty score looks like a DWP PIP assessment form.
I feel this scale feels much more appropriate to elderly people than people with PAH/PH. Also I feel none of the scores really explain how I am at this moment but I had to choose one.
Seeing the different levels in the scale could cause an emotional response. Even just bringing up the subject could make people feel fragile or remind them of their fragility. Administering the questionnaire should come hand in hand with psychological support or some kind of safeguarding.
CAREGIVER THOUGHTS
50%of the people respondents provide care for are female (50% male)
75%have Idiopathic Pulmonary Arterial Hypertension (IPAH)
25%have Pulmonary Hypertension in association with Congenital Heart Disease
50%have been diagnosed for over 2 years (25% 1-2 years, 25% less than 6 months)
75 % of respondents thought the clinical frailty scale should be completed by the patient and the healthcare professional together. 25% thought it should be completed by the patient alone. No-one thought it should be completed only by the healthcare professional.
The survey asked respondents to identify how they would feel about the frailty scale being used as part of the assessment into how PH is affecting the person they provide care for.
Presenting a list of statements, it asked them to choose which of them they relate to or agree with:
50%
“I think the frailty score would help describe how PH is impacting on the person I provide care for”
50% “The world ‘frailty’ makes me feel uncomfortable”
25%
“I do not have concerns or reservations about a frailty score being used as part of their care”
25%
“I have concerns or reservations about a frailty score being used as part of their car”
25%
“I don’t think the word ‘frailty’ describes the person I provide care for”
0%
“I think it would be helpful for the frailty score to be completed at every appointment they have with their PH team”
Comments received about the clinical frailty scale or its potential use in the care of people with PH:
I can’t pick a score for my husband. None of the descriptions fit.
I think this could be used in addition to EmPHasis-10 but not instead of it.
While it may be generally useful, it does not differentiate between support needs due to physical frailty caused by PH and support needs due to a learning difficulty. Therefore it is probably less useful in the minority of patients with both PH and Down’s Syndrome.
We are grateful to everyone who responded to this survey. If you have any questions about this report, please email office@phauk.org