Introduction
Wider Impact & Value Based Health Care
Advanced Therapy Medicinal products
Family-reported outcome Measure-16
Study aims
Methods
Recruitment
Patients
Family members
Data collection
Questionnaires
Interviews
with one additional question:
Data Analysis
Results
Recruitment
Demographics
Diagnoses
Results
FROM-16 and GHS scores
Item | Mean | Median | Mode | Standard Deviation | ||||||
---|---|---|---|---|---|---|---|---|---|---|
Domain 1 | Item 1 I feel worried | 1.54 | 2 | 2 | 0.66 | |||||
Item 2 I feel angry | 0.63 | 1 | 0 | 0.65 | ||||||
Item 3 I feel sad | 1.25 | 1 | 1 | 0.68 | ||||||
Item 4 I feel frustrated | 1.04 | 1 | 1 | 0.75 | ||||||
Item 5 It is difficult to find someone to talk to about my thoughts | 0.83 | 1 | 0 | 0.82 | ||||||
Item 6 Caring for my family member is difficult | 0.71 | 0.5 | 0 | 0.81 | ||||||
Domain 2 | Item 7 It is hard to find time for myself | 0.83 | 1 | 0 | 0.87 | |||||
Item 8 My everyday travel is affected | 0.71 | 0 | 0 | 0.91 | ||||||
Item 9 My eating habits are affected | 0.71 | 0 | 0 | 0.91 | ||||||
Item 10 My family activities are affected | 1.29 | 1.5 | 2 | 0.81 | ||||||
Item 11 I experience problems with going on holiday | 1.42 | 1.5 | 2 | 0.65 | ||||||
Item 12 My sex life is affected | 1.04 | 1 | 2 | 0.95 | ||||||
Item 13 My work or study is affected | 0.96 | 1 | 0 | 0.95 | ||||||
Item 14 My relationships with other family members are affected | 0.71 | 1 | 0 | 0.75 | ||||||
Item 15 My family expenses are increased | 0.88 | 1 | 1 | 0.74 | ||||||
Item 16 My sleep is affected | 1.17 | 1 | 1 | 0.76 | ||||||
GHS | 6.18 | 6.5 | 8 | 2.40 | ||||||
Mean Totals (current study) | Mean Scores from previous studies (references) | |||||||||
25 | 27 | 28 | 30 | 40 | ||||||
Domain 1 – Emotional | 6.00 | 5 | 4 | 2.95 | 5.6 | 4.7 | # | # | # | |
Domain 2 – Personal & Social Life | 9.71 | 8.5 | 5 | 6.13 | 6.7 | 7.1 | # | # | # | |
Total FROM-16 Score | 15.71 | 14 | 10 | 8.51 | 12.3 | 11.8 | 16.8 | 10.7 | 15.02 |
FROM-16 validity and reliability
Confirmatory factor analysis
Interview thematic analysis
Positive and negative impacts
Item/Code | Example quotes |
---|---|
Positive impact on social life | Well, the good thing that’s come out of it is how I feel so fortunate and blessed with my family and my friends, and my church |
I must admit, I’ve got good friends, and everybody used to ring me up to find out how I was and how [NAME REDACTED] was, you know, family as well. Always used to ring me. And if I needed to talk, you know, I could always ring them, which was nice, and sometimes I needed that. |
Item/Code | Example quotes |
---|---|
Negative impact on social life | Like I haven’t been into church and we were regular attenders for two years |
Oh, for two years he hasn’t been out except has to keep his hospital appointments… we’ve always done more-or-less everything together | |
He wasn’t up to doing a lot, you know, so our social lives sort of came to a stop for a while because he just didn’t feel like he wanted to go out or do anything. You know, he was tired, you know, lethargic. It made a lot of difference to our social life. And we played skittles as well. You know, we’re in the skittles team. So he couldn’t do that very often because he didn’t feel up to it. | |
Like I want to take her to like social baby groups and things. But then I got the other side of me with like the stigma. Because she’s on, like, an NG-tube, and she’d be the only one in the group like that. They’d be wondering, like, why is she still holding her at that age? You know, I got all that against me. | |
Can’t even…. because they’re low-immune and all the rest of it, we can’t even contemplate going out |
Item/Code | Example quotes |
---|---|
Positive impact on relationships | The positive things are obviously, you know, that we talk a lot and my husband does a blog about his condition. So it’s sort of, the wider family are much closer now. People are talking and phoning each other and things like that. So it’s actually sort of brought the family closer together in that respect |
And I suppose, you know, as a positive, we sort of appreciate each other’s company more. We don’t take each other for granted like we did. | |
So, you know, we’d been sort of this very much the two of us, I suppose. More so than we were before. You know, we were doing our own things and whatever, which was nice. But I suppose we tend to do more together now. | |
And I suppose we were fortunate enough that we had family that rallied around us to help us in all sorts of different ways. So again, I suppose my relationship with other family members are affected in one sense. Yes, not necessarily… Positively |
Item/Code | Example quotes |
---|---|
Negative impact on relationships | I feel like we’re missing out on like the rest of the family’s, things going on. Like she’s got cousins who only live like 30 min away, but like, she hasn’t really built a relationship with them, they’re all around the same age |
So that impacted our lives greatly as we were only seeing like two sets of grandparents. Now, that was unhealthy for me personally | |
And we had the opportunity to go on holiday with our family from New Zealand, to Thailand, but we couldn’t because [NAME REDACTED] had to be back. And it was [NAME REDACTED] sister’s 70th. And because we had to be back for a day where she had to be at UCL for an interview. And obviously they couldn’t understand why we couldn’t go | |
My relationship with family members means that it’s quite often affected because […]. If I say I’m doing something with a family member, it’s always on the proviso “has [NAME REDACTED] got a hospital appointment?” | |
Yes, the effects are I don’t get to spend as much time with my daughter, who is ten years old. And so, my relationship with her is affected by what’s going on |
Personal importance of impact
Item/Code | Example quotes |
---|---|
Downplaying impact | …at any given time, any one of those could be at the forefront of being a particular issue. I mean, each of these has been an issue at various different times. I mean, that the whole thing about going on holiday. Yes. It’s massively stopped me going on holiday. But is it an important aspect to me? Absolutely not. I’m not worried about not going on holiday and family activities for. |
And I think the great positive thing is, is that it’s really made us reflect on our current life and made us more grateful for the things that we have | |
And I don’t think we’ve had more than 2 or 3 weeks, other than post-op, when he hasn’t had scans, tests, hospital appointments, which of course, we have prioritised and it’s not a problem to prioritise | |
I didn’t mind finishing work at all apart from the financials | |
You asked about sex life, not that that’s irrelevant but there’s no way we could have considered it. I mean, I think about the surgery and how ill he’s been. A cuddle and hug means the world, but that’s about it. Um, I struggle to see anybody going through what we’ve been through that could even contemplate anything like that. To be honest, because it becomes irrelevant almost. | |
I’d say she’s till the same child that I would have had anyway. Just with a few more bits added on. I’m not treating her any different to any other child or anything |
Item/Code | Example quotes |
---|---|
Coping strategies | You know, because I couldn’t go shopping so I’ve been stuck in with him for two years, but I’ve got used to it! |
You do it and you get through it because you’re strong | |
But we’re very lucky that we’re a strong unit and we’ve muddled through. | |
No, I’ve always taken my frustration out on the garden | |
So it was more about trying to manage our time and what we were doing. | |
But you know it’s urm, you just take every day as it comes, you know | |
We can’t always be spontaneous about the things we do because [NAME REDACTED] is always having to go for appointments or treatments or tests or something. But we think it’s a small price to pay for the treatment, ongoing care and treatment that she’s getting now. | |
I think that there has to be normality in life. And I think the fewer people that actually do know, the more normal your life can be, apart from those ones that I truly trust. |
Future Outlook
Item/Code | Example quotes |
---|---|
Impact on future | Yeah, I think it’s relevant because I think it’s relevant to assess somebody’s mental health as well, that they feel that they are able to look forward to something. Because when you are going through something like this, that was truly horrendous, and impacts on every aspect of your life. I think you cannot look forward, you can only cope with that day, that week. |
We used to do a lot of long term planning. And I suppose it sort of made me realize, you know, we can’t plan too far ahead | |
I mean, we’re hoping he’ll have a nice long spell of good health, but I think it stopped us from planning way ahead just like we used to | |
if you wanted me to sum up, I think the worse thing is, you know, not being able to plan long term. I think that’s how it’s affected both of us the worst of everything. |
Item/Code | Example quotes |
---|---|
Impact on personal health | But it doesn’t sort of relate to the fact that, myself or someone in my situation might also have health issues and how that then the interaction between two different health issues. |
I suppose you could say my health perhaps isn’t involved because I had I’ve had awful toothache, which, because of my husband’s treatment, him being vulnerable and COVID-19. I put up with toothache for about three months. | |
At times it was very difficult, especially when I was suffering my own ill-health (haemolytic anaemia) |
…probably, apart from how do I feel moving forward?