Living With Breathlessness

1. Living With Breathlessness Anne-Marie Russell; Janelle Yorke; Ekhlas Al-Gamal & Paula Ormandy Funded by Action Medical Research

2. Principal research objective • To explore the experience of living with breathlessness as described by the patient and their spouse/partner.

3. Secondary research objectives • 1) To examine the level of agreement between the patient and their spouse/partner on breathlessness severity (measured by D-12 questionnaire) • 2) To explore patients’ and their spouse/partner’s perceptions of the impact that breathlessness has on personal relationships. • 3) To explore the patients’ and their spouse/partner’s coping mechanisms and support needs. • 4) To explore the impact that breathlessness has on the independence of the patient and their spouse/partner.

4. Design • Mixed methods approach: • Quantitative (questionnaires) • HADs – partner & patient • D12 [These Days] – partner for patient & patient for self • Qualitative (interviews) • Semi-structured approach

5. Living with breathlessness: Patient interview schedule • What is it like for you living with breathlessness? • What kind of help do you need to manage: • Physically • Emotionally • Socially • How does your breathlessness impact on your personal relationships? • What self-management strategies do you have to cope with being breathless? • Who do you go to for help and support [ prompt: GP?; PN? Or other HCP] • Does your breathlessness stop you do anything that you and your partner could enjoy doing together? Or that you could do on your own? • What information have you been given? • What information do you need? • How has the information that you have been given helped? • Why do you think it has helped? • Where do you see the future? • Is there anything else about your breathing or illness experience that you would like to tell me about?

6. Participants • Inclusion criteria • Patients experiencing breathlessness attributed to a diagnosis of chronic obstructive pulmonary disease (COPD) or idiopathic pulmonary fibrosis (IPF), and their spouse/partner • Couples living together • Able to read and understand English • Participants agree / able to be interviewed separately to enable us to explore concordance between patients and spouse/partner experiences and perceptions of living with breathlessness.

7. Participants • 20 patients participated in the study • 14 with diagnosis of ILD • 6 with diagnosis COPD. • The only statistically significant differences between the two groups were age and smoking pack years • All other variables are reported for the both groups combined (n=20).   Age & smoking pack years for ILD and COPD

8. Employment Status: Patients • The majority of patients were male (n=18, 90%) • 100% white UK origin • Most were associated with skilled manual employment

9. Employment Status: Partners • 20 partners participated 90% were female (n=18) • 100% UK white origin. • Most were associated with administrative (n=8, 40%) or manual employment (n=6, 30%)

10. Data analysis • Transcribed interviews analysed using thematic analysis (Green and Thorogood 2004). • The procedure of reflecting, coding, categorising, and identifying emerging patterns and themes were used. • This analysis conducted separately for the patient and spouse data and emerging themes compared. • Micro analysis (i.e. comparisons between individual patients and their carer) is also conducted. • Descriptive statistics used to summarise the sample population and responses to the Dyspnoea-12 and HADS.

11. Differences in patients and partners scores for D-12 & HADS Partners reported higher levels of anxiety compared to depression (p <0.001)

12. Patients with a HADS score ≥ 8 reported significantly more severe breathlessness Mean difference = 11; p = 0.001 Mean difference = 9.7; p = 0.006 D-12 scores for HADS anxiety groups D-12 scores for HADS depression groups

13. Thematic analysis:Analytical Framework – Level 1 • Wider family issues • Frustration • Can’t do what I used to • Impact on partner • Protection of significant other [pretending to be well] • Impact of symptoms on psychological well-being • Impact of symptoms on social well-being • Impact of symptoms on physical well-being • Impact on personal relationship • Environmental adaptation • Miscellaneous themes • Perception of Breathlessness • Physical Impact of Breathlessness • Emotional Impact of Breathlessness • Social Impact of Breathlessness • Self Management strategies • Coping strategies – “need to know or not know” • Information needs – level of understanding / knowledge of disease process • Support and help • Planning for the future • Experience of HCPS [healthcare professionals] / services • Financial impact of breathlessness

14. Patients’ Experience • The impact of breathlessness was great and had an impact on every aspects of their lives. • Physical Impact “I can’t cope with a physical side of things because of my breathing now that annoys me I can sit there and Joyce said I’ll go put those plants in that was my job you know and I stand there and watch her and I say do you want me to bring you some water and she’ll say no because she knows that’ll I’ll be worse afterwards” [P 11]

15. Patients’ Experience • Emotional Impact “it’s depressing sometimes because uh I used to be so fit… um but uh like I say with age or what or this breathlessness it limits you to what you can do”. “Uh I get frustrated because I can’t do what I want to do um”. • Social Impact “we love travelling around um we go all over, we’ve been to France, at the minute I feel that I’m better off in this country, I don’t want to be too far away from Dr ___ to be honest (laughs)……… wherever we go away I can be back in a few hours you know”

16. Patients’ Experience • Financial Impact “Oh well we’re managing because as I say I’ve been made redundant and I was looked after I was, do you understand me, we only do things when it’s for our benefit and you know we’re not we’re not out gallivanting and in in the pub everything night and anything like that”.

17. Patients’ Experience • Self management strategies • Control breathlessness Pacing: “Well I think you just learn over time to re pace yourself...............you learn to re pace yourself and the things I used to do which I just simply, cannot do and therefore I’ve programmed them out so therefore I don’t even think about them anymore so I do try to walk as much as I can but… on a far less ambitious level”.

18. Patients’ Experience • Medication: “since I got that new inhaler I’ve been much better but when we’re going out I’ve only to use that in the morning and at night two puffs in the morning two puffs at night-time but when we’re going out and we don’t walk far only around B Town doing a bit of shopping I bring the ventolin the little hand one just in case it builds up and I take a couple of puffs of that have a rest and then we’ll have a brew and then I feel that it’s eased off then do another little walk and shop”.

19. Patients’ Experience • Positive thinking “ I don’t let it worry me too much”. “ I’m learning to live with it you know”. • Pretending to be well “If I'm not great, I say I’m great”.

20. Patients’ Experience • Experience of Health care professionals “Oh very happy with the GPs yeah very good we’ve been with them well we’ve been with them for uh well many years ….he’s very good very helpful and there’s uh very good”. • Information needs (Need to know or not know) “I haven’t asked any questions because I don’t want to ask questions in case I don’t like the answer so um I haven’t really asked any questions about it I know it’s a progressive illness and, but I didn’t want to be told anything I wouldn’t like, so I don’t ask any questions”.

21. Patients’ Experience “Now I like to know everything, I like to know everything”. “If I want to know something I will go and ask it or when I go and see him I’ll ask the doctor”.

22. Partners’ Experience • Physical Impact “I never sleep through I never no always wake up two or three times in the night, see if he’s alright”  “I don’t think {get enough rest] so no but that’s the least of my worries”. • Emotional Impact “I worry, just sometimes I get scared”.

23. Partners’ Experience • Social Impact “I’ve had it for over a year and we used to go a lot of walking and things and we still but it’s gradually gotten less and less um… we do different things now uh”

24. Leaving the Field • Counselling Support to debrief.....

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