Background
Introduction
Inflammatory bowel disease
Models of integrated IBD care in other countries
Crohn’s and colitis UK
Aim
Method
Study design
Participants and setting
Questionnaire
Research questions
Analysis
Themes | Subthemes |
---|---|
Quality of life | a. Impact on emotional/mental health b. Impact on physical health c. Impact on social health d. Impact on occupational health |
IBD clinicians and better access | – |
Clear IBD care pathway | a. Access to psychological and dietician services b. More advice and practical support on living with IBD c. Better education for GPs and A&E staff d. Availability of IBD care facilities |
Rigour
Results
Demographics
Baseline | |
Answering the 1st question (n,%) | 610 (78.50) |
Answering the 2ndquestion (n,%) | 600 (77.22) |
Answering the 3rd question (n,%) | 419 (53.92) |
Age (years) (n, %) | |
Under 16 | 37 (4.85) |
16–65 | 671 (88.06) |
Over 65 | 54 (7.09) |
Sex | |
F (n, %) | 406 (66.56) |
M (n, %) | 204 (33.44) |
Last flair up (n, %) | |
Less than 6 months ago | 367 (50.62) |
6–12 months ago | 124 (17.10) |
1–2 years ago | 107 (14.76) |
2–4 years ago | 70 (9.66) |
More than 4 years ago | 57 (7.86) |
Length of diagnosis (n, %) | |
Less than a year | 17 (2.33) |
1–5 years | 265 (36.35) |
5–10 years | 181 (24.82) |
10–20 years | 142 (19.47) |
Over 20 years | 124 (17.00) |
Key themes
Quality of life
-
Participants described that living with IBD affects their emotional and mental health in a way that some consider it to be worse than a terminal illness (Table 3, quotes 1 & 2). Some participants described that the emotional impact for them is so great, that is affecting their confidence and sense of self (Table 3, quote 3). Others describe that the disease has left them feeling embarrassed and isolated with very little energy to form or keep up relationships (Table 3, quotes 4, 5, 6 &7).Table 3Quality of life: Impact on emotional/mental healthQuote no.QuoteQuality of life: Impact on physical health1.“The extreme tiredness is very hard to cope with.”(P315)2.“Feel tired even when asymptomatic. This affects my working ability and it would be very helpful to receive some sort of financial help like a tax credit or small benefit so I could always work 4 days a week without struggling.”(P412)3.“The fatigue that is debilitating and under estimated.” (P61)4.“My life has went on hold since diagnosis. Either because of pain or fatigue I have been unable to go on holiday, and worse still, my work has been hugely affected with long absences…”(P169)Quality of life: Impact on social health5.“Can be difficult when out for day and have to join queue for toilet-if use disable one can get dagger looks from other people who are me judging me as they don't realise what it is like as I do not look any different .” (P5)6.“I have lost 3 years of an important stage in my life to Crohn's and it has affected my friendships, my family and my education. “(P50)7.“Also feel quite fed up about having IBD because of travelling issues and being anxious about needing the toilet and having access to a toilet. The fear never goes away and you are always on the alert for where the nearest toilet is even if you hardly ever have to go urgently. “(P136)Quality of life: Impact on occupational health8.“It's very difficult and I worry a lot about not being able to work and pay my mortgage. Was refused benefit when I was off for around 6 months the last time.” (P41)9.“It isn't easy. Struggling more with working as I get older and coping with IBD.” (P102)10.“It is a constant struggle to get any welfare when not able to work. I have worked since I was 16 and paid my way but never there when I need it adding to stress levels” (P168)
-
Participants described experiencing depression and anxiety that often followed exacerbation of symptoms, and therefore a identifying a need for acknowledgement and support for that aspect of the disease (Table 3, quotes 8, 9 & 10).
-
In addition to the mental health, participants identified the effects of constant tiredness, fatigue and pain (often present even in remission) on their physical health as a key area that needed to be addressed by practitioners. The quotes 1, 2, 3 & 4 (Table 4) demonstrate the participants’ experience of the physical effect the disease has on quality of life that they feel is underestimated.Table 4Quality of life: impact on physical, social and occupation healthQuote no.QuoteQuality of life: Impact on emotional/mental health1.“..at least cancer has the decency of killing you after torture. Not build you up and attack again…Also on antidepressants…” (P1)2.“it takes over your life….always have constant fear of what’s next.” (P148)3.“..impact on confidence is greatly affected..” (P8)4.“This illness is so debilitating and embarrassing…” (P131)5.“people don’t realise just how low you can get when having a flare up…it just drains you emotionally.” (P95)6.“its been horrendously isolating….has precluded me from contemplating seeking a partner.” (P139)7.“its horrible and upsetting and makes life a lot more difficult for the sufferer and sufferer’ family.” (P40)8.“More could be done on the counselling side of things too, depression and anxiety can follow a flare up.” (P36)9.“I find stress makes me flare up and feel that the nurses and GP's seem to be disregarding the help people need emotionally.” (P86)10.“Fatigue, stress and anxiety all make the condition worse and are brought about by it but no strategies are ever offered by NHS staff.” (P155)
-
The quotes in this section describe the patients’ experiences of the impact that the disease has on every aspect of social and family life, leading to social isolation in some instances. Simple social activities that most people take for granted, such as going to town, or for a meal, can often be very stressful events due to not having access to disabled toilets (Table 4, quotes 5, 6 & 7). Participants wished for more support to be given to deal with these issues.
-
The impact the condition has on occupation is particularly interlinked with the other domains of quality of life. Participants identified that coping with the disease and all the side effects, makes work very difficult for them (Table 4, quote 9). They also expressed the need for better help with benefits and welfare when unable to work (Table 4, quote 8). Some felt that the impact on occupational health presents a great cause for further distress (Table 4, quotes 9 & 10).
IBD clinicians and better access
Quote no. | Quote |
---|---|
IBD Clinicians | |
1. | “Quicker access to medical help over the weekend, my inflammatory flare ups always happen over the weekend. NHS 24 is hopeless over the weekend “(P78) |
2. | “That they don't only support your physical disease but the emotional scars it leaves. That between the GI ward and IBD nurse it just feels like one big family. “(P78b) |
3. | “More frequent gastroenterology visits with gastroenterologist or IBD nurse. Surely an IBD nurse for every sufferer in Scotland is achievable.”(P213) |
4. | “IBD nurses are amazing people and having a named nurse to call when things go wrong is an amazing resource that is seriously undervalued.” (P58) |
5. | I wasn't referred to the IBD nurse until I first went to hospital on the mainland. I live in a very remote area and knowing that this resource was available would have been very useful when I was first diagnosed. (P359) |
6. | But having a nurse specialist is of great support and keeps things monitored much more closely (P89) |
7. | Easier access to IBD and stoma nurse. (P64) |
8. | More staff/nurses! The current ones are overworked and underpaid. (P85) |
A more explicit IBD care pathway
A more explicit IBD care pathway | |
1. | “…but I kept being put back to day one in waiting lists in the next department, and felt there was a real lack of co-ordination between different departments in the hospital for outpatients, and was regularly made to feel that every department worked in isolation and only interested in their own deadlines…So I would improve the NHS by making different departments working together more rather than in tunnel vision. “(P145) |
2. | “I have never seen the IBD nurse. I would like to know if he is available to me. Not sure who to ask.” (P234) |
Access to psychological and dietician services | |
3. | “I think more psychological help should be available, especially for people diagnosed as children, teenagers or young adults as it impacts your whole life and is still a taboo subject so it's difficult to talk about it” (P179) |
4. | “A review by a dietician who is knowledgeable about IBD and allergic reactions of gut to chemicals”(P20) |
Better information and practical support on living with IBD | |
5. | “..more advice on how to live with IBD.”(P67) |
6. | “Starter information pack giving new sufferers advice about lifestyle and diet.” (P170) |
7. | “NHS care would also be improved by holistic approach that tackled non bowel symptoms such as fatigue.” (P213) |
Better education for GPs and A&E staff | |
8. | “There needs to be more belief in what patients are saying to health professionals about our symptoms and pain. I have felt on so many occasions that I'm not being believed. It minimises my pain and agony which affects my belief and trust in myself and my doctors too… It also makes me feel like I need to be on top of my game all the time, fighting and advocating for myself and the correct treatment. Sometimes I feel like its 'them vs me' when we should all be working for the same end goal at getting me better. This can be even more exhausting on top of the disease itself.” (P135) |
Availability and coordination of IBD care facilities and services | |
9. | “When in hospital I think putting u in a ward with a shared toilet is a bit hard.”(P184) |
10. | “I have had very little follow up care after being diagnosed in 2012. My referral has been lost twice and I am still not under the care of a gastroenterologist or on any medication despite my diagnosis! (P768) |
-
This sub theme identifies the need for a more holistic approach to the condition, where all symptoms, including the extra-gastrointestinal ones are addressed early on. Quotes 6, 7 & 8 (Table 6) describe the need for advice and support being available to patients with IBD as part of the care package.
-
Patients with IBD felt that health professionals have to be better educated about the condition. Participates often felt they had to ‘fight’ with clinical staff because of their lack of knowledge on IBD and often felt like they are on opposite ‘teams’. In addition, they recognised that it is very difficult or impossible to be an advocate for the disease and their care particularly at critical times, when their symptoms are exacerbated. Quote 9 in Table 6 comprehensively captures what other participants also described.
-
Another area highlighted by patients was the availability of their own toilet on the ward, not having to share a room with others and the poor quality of hygiene in hospitals (Table 6, quote 10). In addition: quicker appointments, quicker diagnosis, regular follow up and at least, an annual review of care and local IBD facilities for patients living in the remote areas was among the other key areas identified by the participants in need of improvement (Table 6, quote 11).