The role of patients, nurses and general practitioners in asthma management: participants’ goals Steven K, Sullivan FM, Williams B, Hoskins G. University of Dundee Funding: CSO Research Training Fellowship • Background • Aim • Sample • Findings: – Patients’ goals for the health professional / patient relationship – health professionals’ goals for the health professional / patient relationship • Discussion • Future of the project Background May be differences between patients’ goals and health professionals goals for asthma management: • poor rate of patient compliance with asthma drugs • differences between patient goals and the goals in the British Thoracic Society (BTS) guidelines Aim To help health professionals to elicit patients’ disease related goals in order to make management more patient-centred and to help patients to self-care Outline of project • Qualitative study to describe the asthma management goals of people with asthma and primary care health professionals • Development of an instrument to improve asthma nurse’ ability to elicit patients’ asthma goals • RCT of instrument Method • One to one interviews with each participant • Interview based on a topic guide • Interviews recorded and transcribed verbatim • Transcripts analysed using Framework Method: sample • a purposive sample of Tayside general practices • each practice was asked to invite 4-6 patients who wanted to change their asthma management or who ought to change their asthma management. Practice Characteristics • Location - 5 urban - 4 rural • Number of GP partners - 2 single-handed - 2 with 2-4 partners - 5 with 5+ partners • Asthma nurse training – 1 with no asthma nurse – 2 with a nurse without an asthma diploma – 6 with a nurse with an asthma diploma • Deprivation payments - 2 receive deprivation payments Patient Characteristics • Gender -3 male, 12 female • Age 16-19: 2 participants 20-29: 0 participants 30-39: 4 participants 40-47: 3 participants 50-59: 3 participants 60+ : 3 participants Patient Characteristics cont. • Social Class I: 1 participant II: 5 participants IIINM: 2 participants IIIM: 2 participants IV: 0 participants V: 5 participants • Time since diagnosis of asthma: 2 – 58 years • Smoking status: 2 current smokers Findings All of the participants had goals related to their perceived role in asthma management and the role they expected of the others: • Patients’ goals • Health professionals’ goals The health professional/ patient relationship: patients’ goals • Requesting treatment from the health professional • Responding to health professional advice Requesting treatment Some of the participating patients had unmet preferences for their asthma – Some patients asked the health professional to meet their needs – Some patients with similar preferences did not Requesting treatment Patients 7a and 9b wanted to try a new drug for their asthma: – Patient 7a requested the drug – Patient 9b did not because she’d ‘never ever been offered it.’ Responding to advice • Two patients had the goal of following ‘doctor’s orders’. • Thirteen patients’ goal was to consider the health professional’s view alongside their own views and sometimes: – reached a compromise position (13 patients) – rejected the health professional’s views (5 patients) Following ‘doctor’s orders’ Patient 2: If the doctor says I've t' take it [medication], I take it, mean?...You've gotta dae what your doctor tells yeh. Ken what I mean. If em no gonna tak the medication, well em no gonna get any better, am eh? I: Yeah. So you feel that he's, he's tellin' you the right thing? [pause] Patient 2: Gotta lot o' faith in Dr X. An I like Dr X. Reaching a compromise Patient 7a: [My GP] always said t' me t' get rid o' my dogs but like that we'd had them for years an you just dinna get rid o' [pause] pets like that. But when we, we lost them naturally we thought we'll give it a year an see if my asthma improves without the dogs. An if it doesna improve then we reckon we're gonna have another one… I: And then you wouldn't ha' got rid o' the dog on account of your asthma? Patient 7a: Um, I think I would've had t' be at death's door afore I…we'd had them for years, we'd had them since they were pups. T' me that's like givin' one o' your kids away Rejecting advice Patient 5c: I think my doctors would like it if I could [avoid the outdoors to avoid pollens etc.] but I'm the sort of person, I say, well I've got this an' its my choice if I go out, whatever happens it’s my choice you know, I don't want to wrap myself in cotton wool and sit at home in a plastic bubble with oxygen piped through it you know, I'm sorry it’s like, no, if my life comes to that please just terminate me now you know, I don't want that, I want to be able to go and have my life you know. The health professional/ patient relationship: health professionals’ goals All but one of the health professionals believed that they were the experts on asthma management and had the goal of getting patients to manage their asthma ‘properly’. The patient is the expert GP 2: We're talking about people who have had asthma – some of them for many, many years – some of them from childhood. And em they are very well aware of of their disability and how the medication affects them and and whatever- they might get thrush if they take too much of the steroid. Um and they come to a compromise between treatment and effect. And that compromise is often less an optimal treatment… The patient is the expert cont. …Well to put it in its bluntest terms, if I'm so prescriptive and demanding and and and hectoring about their asthma, they may not come and see me about something else. And that may be, you know, I I I em I've been in practice as I say 30 years this summer. Many of the families have been with me all of that time – now well into 3rd generations of many of them. Um and I have a responsibility to the whole of the family. You know. Whatever it may be and mostly we're talking about um other kinds of problems, like family problems and drug addiction and abuse and god knows what, and the relationship between the patient and the GP is very, very important for that and a domineering attitude about asthma isn't going to help it. The health professional is the expert but…insisting on the best may be the enemy of the good Nurse 4: It’s not necessarily going to be [to] aim for the best way by teaching them all that it should be regular steroid dose and how to manage their asthma but if that's not happening then we take the next best line rather than trying to resist them and perhaps alienate them by insisting that they do it our way and then they are not wanting to come to the clinic and em and not following any advice. The health professional is the expert but…patients decide for themselves GP4: I honestly can't remember saying ever to saying somebody they'd have to get rid of the dog. Eh obviously I can't tell the patients, I can suggest to them that a dog's maybe not the best thing for their asthma and perhaps if you could keep the dog in a kennel outside the house, you can still have your pet but eh restrict the contact you have with the dog, cut them out of allergens that are knocking around the house if you can em I: But you don't feel it’s your job to say look GP 4: Well no that doesn't work, you just point out the facts to people and they have to make up their own minds. I think gone are the days when people eh listen to what you have to say em, you know I certainly feel that over the years people are less receptive of what you have to say nowadays, they are always looking for something better em and that can be a bit awkward at times. The health professional is the expert but…there are no buts! R: You actually get [patients] coming in and saying, I've never had to use [my inhaler] but checking their peak flows gives you a reasonable idea, checking if they've got a night cough. I've caught a couple [of patients] out just recently that again they haven't been using [their inhalers], not fine and you just go on and you know sort of pop that in, do you cough at night or you know in the morning … I've been wakened a couple of times you know with this persistent cough I can't get rid of it so then you find out that they haven't actually been taking their [inhalers] I: And what do you say next? R: That they, I actually say to them, look I want you to take it, two puffs, three times a day of your reliever and take your steroid twice, em, two puffs in the morning, two puffs at night and I want you to do that em, until your cough disappears and I'll see you back again in say six weeks and that way they do what they are told because they know they are coming back to you in six weeks Strengths & Weaknesses • In-depth interviews • Range of participants • No direct observation of asthma consultations Discussion Barriers to eliciting and using patients’ asthma goals to improve asthma care: – Sometimes patients do not expect to have to voice their asthma goals to the health professional – Some patients expect to ‘follow doctors’ orders’ – Some health professionals disregard patients’ expertise in asthma The future of the project We have devised an instrument to help patients to formulate goals and to increase asthma nurses’ awareness of patients’ goals: • 3 life goals • Does asthma stop you achieving your goals? • 3 asthma goals • Can you achieve your asthma goals?