INFLAMMATORY BOWEL DISEASE Inflammatory bowel disease … · INFLAMMATORY BOWEL DISEASE Journal of...

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I NFLAMMATORY BOWEL DISEASE 29 Journal of Community Nursing May/June 2013, volume 27, issue 3 Key words: Inflammatory bowel disease Chronic illness Patient engagement Self management Inflammatory Bowel Disease (IBD) is a collective name for a number of conditions such as Ulcerative Colitis (UC) and Crohn’s Disease (CD). It produces uncontrolled, chronic inflammation of the intestinal mucosa. IBD is characterised as a chronic illness that is punctuated by disease exacerbation and remission; patients require an individual, multidisciplinary/multimodal approach to care. There is currently no permanent cure for either CD or UC, therefore treatment strategies focus on good symptom control, modification of the disease process and improving quality of life. This article gives an overview of the condition and presents a personal patient experience. Kathryn Foskett Senior Colorectal Clinical Nurse Specialist, The Hillingdon Hospital NHS Foundation Trust, Middlesex [email protected] Article accepted for publication: March 2013 Inflammatory bowel disease - patient engagement and experience Challenges in management Not surprisingly, chronic disease pres- ents an overwhelming challenge to many patients and their families, which may well span over an individual’s lifetime. It also impacts on health care professionals involved in supporting these long term patients in both hospital and community settings. An individual with IBD will journey through the health care system at different points, from initial investiga- tion and diagnosis, through emergency care/admission, surgery (planned or emergency), post operative care and discharge, being taught to manage asso- ciated medical conditions, and finally to follow up care with routine IBD manage- ment 4 . Therefore, no single model of care is appropriate for all patients all the time; care may be delivered in hospital, shared between hospital and primary care, or be supported self-managed care. However, patients with IBD should have access to skilled and knowledgeable professionals who know how it affects lives both phys- ically and emotionally 7 . Nursing has long been recognised as having a key role to play in helping people manage long-term conditions 8 . Research has shown evidence of improved outcomes in patient care from specialist nurses who provide specialist care and lead the co-ordination of care for individuals affected by IBD 9-11 . It is well reported that it is often nurses who are more widely favoured by patient as they are able to spend more time with people giving more detailed information in terms of the aetiology of their disease, its management and consequence of treat- ment modalities 4,8 . It is also felt that nurses often take a more holistic approach to care delivery 5 . At present, a great majority of IBD care is provided by health care professionals based in secondary care; however, due to the unpredictability of the condition, aspects of management can be provided in the primary care setting, taking services I nflammatory Bowel Disease (IBD) is a collective name for a number of condi- tions such as Ulcerative Colitis (UC) and Crohn’s Disease (CD) 1 . Similarities exist between UC and CD, but they are different diseases in terms of clinical pres- entation, pattern of bowel involvement and in response to therapy 2 . However, both conditions can produce symptoms of urgency, diarrhoea, pain, profound fatigue, anaemia and for some patients, in particular those with CD, associated inflammation of the joints, skin, liver, or eyes, which can interfere with activities of daily living. These are known as extra- intestinal symptoms which often correlate with the severity of gastroin- testinal disease. Malnutrition and weight loss are common, with patients often altering their eating habits to alleviate symptoms 3 . As yet, the cause of either disease has not yet been identified, although both genetic factors and envi- ronmental triggers are likely to be involved 4 . The incidence of both UC and CD continues to rise and is now estimated to affect 1 in 200 people in the United Kingdom with men and women equally affected. This incurable disease, which often presents in early childhood and persists throughout life, causing inter- ruptions and limitations to education, work and family roles, has a profound life changing effects on the individual 5 . IBD is characterised as a chronic illness punctuated by disease exacerbation and remission, and requiring an individu- alised, multidisciplinary/multimodal approach to care. There is no cure for either CD or UC; treatment strategies focus on good symptom control, modifi- cation of the disease process and improving quality of life. These include the use of drug therapies to reduce the inflammation and suppress the body’s immune response, appropriately timed surgery to avoid emergency resections, nutritional support, complementary ther- apies, education, lifestyle changes including stress management and indi- vidualised self management strategies 6 . © 2013 Wound Care People Ltd

Transcript of INFLAMMATORY BOWEL DISEASE Inflammatory bowel disease … · INFLAMMATORY BOWEL DISEASE Journal of...

Page 1: INFLAMMATORY BOWEL DISEASE Inflammatory bowel disease … · INFLAMMATORY BOWEL DISEASE Journal of Community Nursing May/June 2013, volume 27, issue 3 29 Key words: Inflammatory bowel

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29Journal of Community Nursing May/June 2013, volume 27, issue 3

Key words:Inflammatory bowel diseaseChronic illnessPatient engagementSelf management

Inflammatory Bowel Disease (IBD) is acollective name for a number ofconditions such as Ulcerative Colitis(UC) and Crohn’s Disease (CD). Itproduces uncontrolled, chronicinflammation of the intestinal mucosa.IBD is characterised as a chronic illnessthat is punctuated by diseaseexacerbation and remission; patientsrequire an individual,multidisciplinary/multimodal approachto care. There is currently nopermanent cure for either CD or UC,therefore treatment strategies focus ongood symptom control, modification ofthe disease process and improvingquality of life.This article gives an overview of thecondition and presents a personalpatient experience.

Kathryn Foskett Senior Colorectal ClinicalNurse Specialist, The Hillingdon HospitalNHS Foundation Trust, [email protected]

Article accepted for publication: March 2013

Inflammatory boweldisease - patientengagement andexperience

Challenges in managementNot surprisingly, chronic disease pres-ents an overwhelming challenge to manypatients and their families, which maywell span over an individual’s lifetime. Italso impacts on health care professionalsinvolved in supporting these long termpatients in both hospital and communitysettings. An individual with IBD willjourney through the health care system atdifferent points, from initial investiga-tion and diagnosis, through emergencycare/admission, surgery (planned oremergency), post operative care anddischarge, being taught to manage asso-ciated medical conditions, and finally tofollow up care with routine IBD manage-ment4. Therefore, no single model of care is

appropriate for all patients all the time;care may be delivered in hospital, sharedbetween hospital and primary care, or besupported self-managed care. However,patients with IBD should have access toskilled and knowledgeable professionalswho know how it affects lives both phys-ically and emotionally7.

Nursing has long been recognised ashaving a key role to play in helpingpeople manage long-term conditions8.Research has shown evidence ofimproved outcomes in patient care fromspecialist nurses who provide specialistcare and lead the co-ordination of care forindividuals affected by IBD9-11. It is wellreported that it is often nurses who aremore widely favoured by patient as theyare able to spend more time with peoplegiving more detailed information interms of the aetiology of their disease, itsmanagement and consequence of treat-ment modalities4,8. It is also felt thatnurses often take a more holisticapproach to care delivery5.At present, a great majority of IBD care

is provided by health care professionalsbased in secondary care; however, due tothe unpredictability of the condition,aspects of management can be providedin the primary care setting, taking services

Inflammatory Bowel Disease (IBD) is acollective name for a number of condi-tions such as Ulcerative Colitis (UC)

and Crohn’s Disease (CD)1. Similaritiesexist between UC and CD, but they aredifferent diseases in terms of clinical pres-entation, pattern of bowel involvementand in response to therapy2. However,both conditions can produce symptomsof urgency, diarrhoea, pain, profoundfatigue, anaemia and for some patients, inparticular those with CD, associatedinflammation of the joints, skin, liver, oreyes, which can interfere with activities ofdaily living. These are known as extra-intestinal symptoms which oftencorrelate with the severity of gastroin-testinal disease. Malnutrition and weightloss are common, with patients oftenaltering their eating habits to alleviatesymptoms3. As yet, the cause of eitherdisease has not yet been identified,although both genetic factors and envi-ronmental triggers are likely to beinvolved4. The incidence of both UC andCD continues to rise and is now estimatedto affect 1 in 200 people in the UnitedKingdom with men and women equallyaffected. This incurable disease, whichoften presents in early childhood andpersists throughout life, causing inter-ruptions and limitations to education,work and family roles, has a profound lifechanging effects on the individual5.

IBD is characterised as a chronic illnesspunctuated by disease exacerbation andremission, and requiring an individu-alised, multidisciplinary/multimodalapproach to care. There is no cure foreither CD or UC; treatment strategiesfocus on good symptom control, modifi-cation of the disease process andimproving quality of life. These includethe use of drug therapies to reduce theinflammation and suppress the body’simmune response, appropriately timedsurgery to avoid emergency resections,nutritional support, complementary ther-apies, education, lifestyle changesincluding stress management and indi-vidualised self management strategies6.

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closer to the patient5,7. However, manyoutside specialist nursing roles such asthe school nurse, practice nurse, andcommunity nurse, will at some pointinterface with individuals affected by UCor CD in the community setting. There-fore, they need to be prepared, and havea greater understanding of the issues thatindividuals living with IBD have to facethroughout their disease trajectory, alongwith an understanding of the impact thisillness has on those around them. Pullen& Julian1 suggest that basic support andinformation can be provided by non-specialist professionals. Educating thepatient to report infection or any adversereactions to medications promptly, util-

patient with IBD should be aware of theimpact of such an unpredictable illness,and support the patient in order toimprove concordance. Patients with UCare five-times more likely to relapse ifthey fail to take their 5-ASA therapy14

(medication); those who require hospi-talisation owing to relapse andsubsequent treatment of disease compli-cations cost the NHS 20 times more thanpatients in remission16. Patient informa-tion has long been seen as a keycomponent in patient self managementideologies16 and has continued to be thefoundation for many chronic diseasemanagement programmes since. Apatient perspective is outlined in Box 1.

ising support groups and learning moreabout their disease process can be helpfulto patients and families.

Patient choicesPatients who are well-informed abouttheir illness and how it can be treated,who have a clear understanding of theservice being offered to them and whoreceive support from the IBD team inadapting to the social and psychologicalimpact of IBD, will be able to managetheir illness more effectively and have agreater chance of achieving a betterquality of life within the constraints oftheir illness12,13. Thus, all health careprofessional involved in the care of

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Box 1: Living with IBD; the patient experience

My name is Vanessa Denvir; I am 42 years old and single. I’m an artist, primarily working with ceramics and glass; someof my work reflecting patient experience is on exhibition at the Manchester Royal Infirmary (MRI). I am also a volunteerwith the Colostomy Association and Crohns and Colitis UK.

I enjoy cycling, swimming and love to travel whenever I get the opportunity. Travelling requires a little preparation:finding adequate insurance, carrying a medical certificate from my doctor or ostomy charity (available in multiplelanguages) while passing through security and customs and packing at least a third more accessories than days I’ll beaway. The World Alliance programme ensures that stoma products can be forwarded worldwide to the ostomate trav-eller in emergency circumstances such as lost or stolen luggage. For longer trips abroad it’s always worthwhilecontacting the airline as additional luggage allowance may be offered to assist with medical needs.

I was progressively unwell from 24 to 34 years of age through a combination of misdiagnosis and repeat investigativereferrals. Crohn’s Disease was confirmed in November 2004. Annually 10,000 people in the UK are diagnosed with IBDand up to 50 per cent require surgical intervention at some point. I should acknowledge my circumstances were veryunique, and as a result of a repeat abscessing fistula, rectal cancer was diagnosed in April 2005. I required major surgeryto remove my rectum, a metre of my lower bowel and to site a colostomy that functions like an ileostomy.

From diagnosis to discharge and beyond, colorectal, stoma and ward nursing teams were empathetic and supportive. Iwas fully informed about the procedure, what to expect life to be like post-surgery, and had several visits from the stomanurse once I’d returned home. Despite all of this, my initial experience of caring for and living with my situation were, tosay the least, tearful. My stoma is permanent, and like all new patients, it took time until I became accustomed to my newaltered body image and bowel function; milestones and familiarity were reached at three, six and twelve month periods.

I reached out for additional support to the Colostomy (CA) and Ileostomy (IA) Associations where I could meet andshare with others in similar circumstances, learning that life doesn’t have to stop just because I wear a bag. CA and IA areindependent charities offering support and reassurance to ostomates, their families and carers. Embracing my new life, Inow support others by volunteering at open days, on telephone help lines or visiting new ostomates in hospital. MyCrohn’s Disease has returned twice since surgery, but with steroid and immunosuppressant medications prescribed tomanage it, I can continue with my creative and voluntary roles.

I am open about having a stoma: working with medical companies sampling new products for the ostomy market,appearing on the ‘Embarrassing Bodies’ series helping to dispel the myths about living with a stoma and, proving youcan still be gorgeous after stoma surgery, modelling beautiful ostomy lingerie and swimwear around the UK.

I recognise the role of the community nurse is a challenging one and encouragingly, at a recent JCN Nursing event, somany nurses and students wanted to know more about how they could support their patients. Knowledge of what thecharities offer aids patients in their awareness and management of their circumstances and in turn supports nursingteams with their daily workload. As cancer was a word whispered in hushed tones twenty years ago, I am hopeful thatstoma awareness and conversation can be had without society’s revulsion with our very daily practice of bowel function.

Vanessa Denvir. February 2013

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For those patients with dry skin conditions such as eczema, The British Association of Dermatologists guidelines advise that the use of soap or detergent based products can exacerbate their symptoms. They recommend the use of soap substitutes.1

Doublebase Bath, Wash and Shower provide an effective alternative to the harshness of soap. They all contain a non-foaming soap substitute, which gently cleanses the skin, and a humectant which attractswater to moisturise the skin. The high oil content softens the skin and protects against dryness.

Doublebase™ Gel. Doublebase™ Emollient Shower Gel.Doublebase™ Emollient Wash Gel.Isopropyl myristate 15% w/w, liquid paraffin 15% w/w.Uses: Highly moisturising and protective hydrating gels for dryskin conditions. Directions: Adults, children and the elderly:Apply direct to dry skin as required, or use Shower and Washgels as soap substitutes.Doublebase™ Emollient Bath Additive.Liquid paraffin 65% w/w. Uses: For the relief of dry skinconditions. Directions: Adults, children and the elderly: Add to

a bath of warm water. Soak and pat dry. Contra-indications,warnings, side effects etc: Please refer to SPC for full detailsbefore prescribing. Do not use if sensitive to any of theingredients. In the unlikely event of a reaction stop treatment.Take care not to slip in the bath or shower. Package quantities,NHS prices and MA numbers: Doublebase Gel: 100g tube£2.65, 500g pump dispenser £5.83, PL00173/0183.Doublebase Shower: 200g shower pack £5.21, PL00173/0196.Doublebase Wash: 200g pump dispenser £5.21, PL00173/0402.Doublebase Bath: 500ml bottle £5.45, PL00173/0200.

Legal categories: Doublebase Gel, Doublebase Shower &Doublebase Wash P Doublebase Bath GSL. MA holder: DermalLaboratories, Tatmore Place, Gosmore, Hitchin, Herts, SG4 7QR.Doublebase is a trademark. Date of preparation: January 2011.Reference: 1. http://www.bad.org.uk/site/796/default.aspx

Adverse events should be reported. Reportingforms and information can be found atwww.yellowcard.gov.uk. Adverse events shouldalso be reported to Dermal.

DoublebaseTM Bath, DoublebaseTM Wash, DoublebaseTM ShowerIsopropyl myristate 15% w/w, liquid paraffin 15% w/w.Liquid paraffin 65% w/w.

BECAUSE DRY SKIN NEEDS A SOAP SUBSTITUTE

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ConclusionChronic illness has a huge affect on allaspects of life for individuals livingwith and affected by IBD. Patientsexperience both distressing physicalsymptoms, interruptions to everydayactivities including education, workand social life and the psychologicaleffects on life that an unpredictabledisease brings. IBD patients will befaced with a number of difficult treat-ment decisions throughout theirillness; such treatments will causesignificant long term consequences toan individual’s health and well-beingas well as living with the expectedeffect of IBD itself.As nurses we should be empowering

patients to take an active role in thedecision making process during allstages of their journey through thehealth care system and encourage themto communicate clearly with all healthcare professionals. Self management isimportant; patients are encouraged totake responsibility for managing theirillness so they are in a stronger positionto deal with relapses and enjoy theperiods of remission. Educationregarding disease management and selfhelp strategies are paramount toimprove concordance and achievingoptimal outcomes.

References1. Julian M, Pullen R. (2012) Caring for a patientwith inflammatory bowel disease. Nursing madeincredible easy! 10; 4: 36-45

2. Talley N, Abreu MT, Achkar J-P et al. (2011)An Evidence-Based Systematic Review onMedical Therapies for Inflammatory BowelDisease. Am J Gastroenterol. 106: S2–S25

3. Inflammatory Bowel Disease StandardsGroup. (2009) Quality Care service standards forthe healthcare of people who have inflammatorybowel disease. Available at: www.bsg.org.uk/attachments/160_IBDstandards.pdf

4. National Association for Crohn’s & Colitis.(2005) Improving Standards of Care for Colitis andCrohn’s Disease. Available at: www.nacc.org.uk/downloads/research/2005/gray.pgf

5. British Society of Gastroenterology (2009)Inflammatory Bowel Disease. Available at:w w w . b s g . o r g . u k / c l i n i c a l /commsioning-report/chronic-inflammatory-bowel-disease.html

6. Nightingale A (2007) Diagnosis and manage-ment of inflammatory bowel disease. NursePrescribing. 5; (7): 289-296

7. British Society of Gastroenterology (2004)Guidelines for the Management of InflammatoryBowel Disease in Adults. Available at:w ww. b s g . o r g . u k / p d f _ w o r d _ d o c s /ibd.pdf

8. Kendall S, Wilson P, Procter S, et al. (2010) Thenursing contribution to chronic diseasemanagement: a whole system approach: Reportfor the National Institute for Health research servicedelivery & organisational programme. HMSO,London

management support information: a qualita-tive meta-synthesis of processes influencinguptake. Implementation Science. 3: 44

14. Kane SV. (2005) Systematic review: Adher-ence issues in the treatment of ulcerative colitis.Alimentary Pharmacology & Therapeutic. 23: 577-85

15. Bassi A, Dodd S, Williamson P et al. (2004)Cost of illness of inflammatory bowel disease in theUK: a single centre retrospective study. GUT. 53:1471-8

16. Department of Health (2007) Raising theprofile of long term conditions care. A compendiumof information. DH, London.

9. Frich LM. (2003) Nursing interventions forpatients with chronic conditions. Journal ofAdvanced Nursing. 44; (2): 137-53

10. Carter MJ, Lobo AJ, Travis SPL. (2004)Guidelines for the management of inflammatorybowel disease in adults. GUT. 53 (supp V): v1-v16

11. Royal College of Nursing. (2007) Role descriptives for inflammatory bowel disease nursespecialists. RCN. Available at: www.rcn.org.uk/publications

12. Department of Health (2005) Self Care - AReal Choice. Self Care Support – A PracticalOpinion. DH, London

13. Protheroe J, Rogers A, Kennedy AP, et al.(2008) Promoting patient engagement with self

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