Background
Methods
Study design
1. Pick out the top issues/areas [cards] of your life most affected by CFS/ME | |
2. Imagine you were able to improve these areas, rank these [cards] in order of what you feel is most important to improve, put the areas at the top you would most like to improve | |
Outcome cards | |
Tiredness | |
Symptoms (pain, headaches, feeling sick, brain fog) | |
Sleep problems | |
Daily activities (getting up, getting dressed, going out) | |
Payback and crashing (tired after activity) | |
Fluctuation (changing symptoms—good day vs. bad day) | |
School (attendance, concentrating, keeping up with work) | |
Activities and hobbies (sports, clubs) | |
Spending time with friends | |
Family activities | |
Mood (feeling down, worrying) | |
How you feel about yourself (confidence, personality) | |
Your future (GCSEs, college, jobs) | |
Independence (doing things without your parents) | |
Seeing your boyfriend/girlfriend | |
PROMPTS: Why have you ranked them in that order? | |
Explore dimensions of outcome cards (frequency/severity/duration/satisfaction) e.g. what symptoms bother you most, what is important about school. |
Participants
Data collection and analysis
Analysis of the card ranking exercise
Quality assurance
Results
Participants
Outcome card ranking (Table 2)
Adolescents | Parents | ||||
---|---|---|---|---|---|
Top ranked outcome cards | No. of pts | % | Top ranked outcome cards | No. of pts | % |
Symptoms | 15 | 71 | Symptoms | 13 | 62 |
School | 15 | 71 | Tiredness | 12 | 57 |
Tiredness | 13 | 62 | Payback and crashing | 11 | 52 |
Payback and crashing | 9 | 43 | Activities and hobbies | 9 | 43 |
Your future | 9 | 43 | Mood | 8 | 38 |
Activities and hobbies | 7 | 33 | How your child feels about him/herself | 8 | 38 |
Friends | 7 | 33 | Sleep problems | 7 | 33 |
Family | 6 | 29 | Fluctuation | 7 | 33 |
Mood | 6 | 29 | School | 7 | 33 |
Fluctuation | 5 | 24 | Family | 5 | 24 |
Daily activities | 4 | 19 | Daily activities | 3 | 14 |
Sleep problems | 3 | 14 | Friends | 2 | 10 |
How you feel about yourself | 3 | 14 | Your child’s future | 2 | 10 |
Independence | 1 | 5 | Independence | 2 | 10 |
Boyfriend/girlfriend | 0 | 0 | Boyfriend/girlfriend | 0 | 0 |
Differences between subgroups: age and gender
Age differences | ||||||||
---|---|---|---|---|---|---|---|---|
Adolescents (12–13 years of age) | Adolescents (14–15 years of age) | Adolescents (16–17 years of age) | ||||||
Top ranked outcome cards | No. of pts | % | Top ranked outcome cards | No. of pts | % | Top ranked outcome cards | No. of pts | % |
School | 7 | 78 | School | 5 | 83 | Symptoms | 6 | 100 |
Payback and crashing | 6 | 67 | Symptoms | 4 | 67 | Tiredness | 5 | 83 |
Tiredness | 5 | 56 | Your future | 4 | 67 | School | 3 | 50 |
Symptoms | 5 | 56 | Tiredness | 3 | 50 | Payback and crashing | 2 | 33 |
Family | 4 | 44 | Mood | 3 | 50 | Fluctuation | 2 | 33 |
Friends | 3 | 33 | Friends | 2 | 33 | Activities and hobbies | 2 | 33 |
Your future | 3 | 33 | Sleep problems | 1 | 17 | Friends | 2 | 33 |
Daily activities | 2 | 22 | Daily activities | 1 | 17 | Family | 2 | 33 |
Fluctuation | 2 | 22 | Payback and crashing | 1 | 17 | Your future | 2 | 33 |
Activities and hobbies | 2 | 22 | Fluctuation | 1 | 17 | Sleep problems | 1 | 17 |
Mood | 2 | 22 | How you feel about yourself | 1 | 17 | Daily activities | 1 | 17 |
Sleep problems | 1 | 11 | Activities and hobbies | 0 | 0 | Mood | 1 | 17 |
How you feel about yourself | 1 | 11 | Family | 0 | 0 | How you feel about yourself | 1 | 17 |
Independence | 1 | 11 | Independence | 0 | 0 | Independence | 0 | 0 |
Boyfriend/girlfriend | 0 | 0 | Boyfriend/girlfriend | 0 | 0 | Boyfriend/girlfriend | 0 | 0 |
Gender | |||||
---|---|---|---|---|---|
Females | Males | ||||
Top ranked outcome cards | No. of pts | % | Top ranked outcome cards | No. of pts | % |
Symptoms | 14 | 88 | School | 5 | 100 |
School | 10 | 63 | Tiredness | 4 | 80 |
Tiredness | 9 | 56 | Payback and crashing | 2 | 40 |
Payback and crashing | 7 | 44 | Activities and hobbies | 2 | 40 |
Your future | 7 | 44 | Family | 2 | 40 |
Friends | 6 | 38 | Mood | 2 | 40 |
Activities and hobbies | 5 | 31 | Your future | 2 | 40 |
Fluctuation | 4 | 25 | Symptoms | 1 | 20 |
Family | 4 | 25 | Sleep problems | 1 | 20 |
Mood | 4 | 25 | Daily activities | 1 | 20 |
Daily activities | 3 | 19 | Fluctuation | 1 | 20 |
How you feel about yourself | 3 | 19 | Friends | 1 | 20 |
Sleep problems | 2 | 13 | Independence | 1 | 20 |
Independence | 0 | 0 | How you feel about yourself | 0 | 0 |
Boyfriend/girlfriend | 0 | 0 | Boyfriend/girlfriend | 0 | 0 |
Conceptual framework of paediatric CFS/ME HRQoL
HRQoL outcome domain | Child and parent quotes |
---|---|
Symptoms | |
Sleep | “Until you rectify the sleep pattern then he’s not going to get better” (RP17, mother of male aged 15) “So you can go to sleep, and you don’t have a restful sleep, so you wake up and you’re like I just want to go back to bed.” (RC8, female, aged 17) |
Tiredness, lack of energy, fatigue | “…it just it feels like I’m really worn out but I haven’t done anything.” (RC9) “just fall or where I just need to sit down wherever I was” (RC12, male, aged 13) “I don’t know really, I think because I’m tired I can only do a certain amount of hours” (RC6, female, aged 15) |
Problems concentrating and paying attention | “…with chronic fatigue you just kind of can’t concentrate for the same amount of time” (RC10, female, aged 13). “brain fog, and you can’t like concentrate properly” (RC12, male, aged 13); “forgotten where you were” (RC12, male, aged 13); |
Individual symptoms | “I think that if I like, some of the symptoms calmed down a bit then I might be able to do a bit more. Like, if I got less dizzy and stuff, and like, if I felt less sick and stuff maybe like I’d be able to go out and do a bit more” (RC3, female, aged 13) “I have back pain, which varies where it is. Like sometimes it’s on my lower back, other times on the top of my back, sometimes it’s the whole of my back, and then it will just be in the spine, and that can be really quite bad. Some days that can be really bad. It’s always there but sometimes it’s sort of cope-able, and other days it’s less cope-able, and I have my leg pain, which is the wobbly but also just sort of hurts and feels like you’ve run a marathon” (RC15, female, aged 16) : “….as bad as it can get, like, I won’t be able to eat very much, like” (RC3, female, aged 13) |
Fluctuation and payback | “I would say the fluctuations from day to day are a lot less, so I have a lot more good days and a lot less bad days” (RC13, female, aged 17) “When it’s worse I get a lot more sensitive to the sound and noise, and my legs tend to get quite a lot worse, and I get a lot more dizzy” (RC15, female, aged 16) “You don’t really know when you’re going to feel okay and when you’re not,… yeah it’s just a bit frustrating” (RC18, female, aged 17) …”the next day if she does too much then she’ll get that payback, and she’ll be aching all day, her feet will hurt all day, she’ll have headaches or throat all day, and it’s just a nightmare.” (RP6, mother of female, aged 15) |
Physical functioning | |
Daily activities, mobility and general activities | “I can’t like move to…get myself to stand up and try and get dressed. “(RC6, female, aged 15) “at one stage we were carrying her up the stairs, she didn’t have the energy.” (RP13) “we do use a wheelchair when she’s out to try and conserve energy.” (RP3, mother of female, aged 13) “…that’s one thing you definitely miss, going out on your bike. But it’s very short bursts”(RP16, male, aged 12) |
Social functioning | |
Participation in school/college | “Yeah. Erm, and getting back into school, ‘cause then I can do my GCSEs and get into the universities and everything.” (RC19, female, aged 15) “Like I can’t go to school and I can’t like read very well” (RC1, female, aged 14) “Interviewer: What is it about school specifically that you’d want to improve? RC14: Being able to concentrate” (RC14, female, aged 15) “Like sometimes my homework I’m just like I’m too tired, I just… and then it piles up, so yeah that’s stressful.” (RC18, female, aged 17) |
Participation in social life | A good day…I can play with erm, my dolls” (RC2, female, aged 12) “to town or to the cinema or to their house instead of them always coming here.” (RC18, female, aged 17) “when it was really bad last year she didn’t really want to play her guitar” (RP14, mother of female aged 15) “…once I stopped going to school a lot of people stopped contacting me” (RC3, female, aged 13) “no friends, no social life, and she doesn’t really have anybody. She’s got about four or five friends.” (RP6, mother of female aged 15) “Family activities, so whatever we organise always has to be around what RC11 can do really, which kind of rubs everyone else up the wrong way doesn’t it.” (RP11, mother of female aged 16) |
Psychological wellbeing | |
Mood | “when it’s really bad it is really, and then I get really emotional as well, which is everything like it just feels horrible.” (RC7, female, aged 17) “…things can change very quickly with different like stuff, and that kind of gets you down quite a lot as well,… sometimes you’re like you don’t know what the point is, because you’re trying and you don’t feel you’re getting anywhere (RC15, female, aged 16) “…extreme like kicking off about stuff. Because actually that’s one thing that he doesn’t really do since he’s got a bit better” (RP16, mother of male aged 12) |
Worry and anxiety | “He will have anxiety so he’ll want to change his room around maybe, or it will show itself in that, or he will be not able to sleep at all.” (RP17, mother of male aged 15) “I don’t really wanna leave the house, ‘cause I think I might be ill.” (RC19, female, aged 15) “Going to college, I don’t know why I get anxious about that, and talking in class and all that side.” (RC14, female, aged 15) “RC21: And sometimes I do worry a lot, I just feel sad for no reason. Interviewer: Yeah, and worrying, is that- what is that about? RC21: Erm, my future, so what I’m going to get in GCSEs, what happens if I fail this subject or this subject?” (RC21, male, aged 15) |
Self-esteem | “I just didn’t feel very good at all about myself, so no point really, because you can’t do anything, there’s no point trying or anything with anything.” (RC11, female, aged 16) “…and self-esteem. Feeling she’s not um, she feels that she’s not achieving academically, that she’s not liked, she’s got no friends, everybody hates her.” (RP10, mother of female aged 17) “She just seems sort of devoid of any energy, listless, draws into herself a little bit, goes into her shell”. (RP8, father of female aged 17) |