A qualitative exploration of the follow-up care needsof patients with inflammatory boweldisease Dr Karen Kemp, NIHR Research Fellow / Inflammatory BowelDisease Nurse Practitioner

CMFT Nursing Midwifery Strategy• To provide information for nurses and midwives to focus service

changes and improvements on what patients, users and the public tell us

• Provide opportunities for nurses and midwives to share their experiences with senior nursing teams

• Respond to nurses and midwives ideas and plans based on providing the best patient care and experience

• Where care falls short of expectations, support nurses and midwives to be honest, open and transparent with patients and families

Objectives • To communicate how a clinical problem

can be directly translated into a research question

• Demonstrate how nurses can influence care to meet local and national agendas

I listened ....

I responded .....

I responded ....•Identified a problem -pilot study•Research question•Grew into a project•Met with experts•Right direction•Worthy of an NIHR application!!!

Aims & objectivesThe development of a best evidenced model of follow up

care that is acceptable for patients with inflammatory bowel disease.

To understand the health and social needs of patients living with IBD To explore patient preferences for follow up care delivery, by whom, when and where. To examine the current role of the GP, their preferences for improved follow up care and their involvement in IBD care.

To examine the role of the IBD nurse and scope for further development within the modelTo identify the range of pathways of follow up care, synthesise the evidence to develop an acceptable model of follow up care using the MRC Framework

MRC Framework for the development of complex interventions

Evidence of organisation•Open access (Williams 2000, Cheung 2002, Pearson 2005)

•Patient experience of open access( Rogers 2004)

•Self management (Robinson 2001, Kennedy 2003), Stansfield 2008, Gethins 2011)

•No difference in QoL, both self management group and control group worse off QUALYS, no adverse events (Richardson 2006)

•Patient and demand directed care (Rejler 2007)

•Telemedicine (Cross 2007, 2009,Rosser 2009)

•E-Health / E-homecare (van Helden 2010, Elkjare 2011)

•Virtual clinics (Porrett 2004, van Dullemen 2005, Hunter 2012)

Policy Drivers•The Health Bill DH2010

•The NHS Outcomes Framework 2011

•QoF 2012 / 2013

•10 NHS High Impact Actions DH 2010

•Transforming our Health Care System: 10 Key Priorities for Commissioners 2011

•‘Your health, your way’ DH 2009

•Long terms conditions collaborative :High Impact Changes DH 2009

•‘Improving the health and well –being of people with long term conditions ‘ DH 2010

•British Society of Gastroenterology Commissioning Guide 2012

•IBD Standards 2009

Missing element• Evidence of follow-up care regimens

• Lacked really knowing what it is like to live with IBD

• Meta-synthesis of qualitative evidence

• ‘Understanding the health and social care needs of people living with IBD; a meta-synthesis of the evidence

• Evidence, policy drivers and meta-synthesis platform to base the interviews upon

Patient interviews•Ethical approval from NW 2 Ethics Committee Liverpool Central Aug 2010

•Single site

•24 patients over 10 months

•18 patients had Crohn’s Disease, 6 patients had ulcerative colitis

•Age range 27-72 years

•Disease duration range 2-40 years

•Interviews were 40-60 mins

•Analysed using Framework Analysis

Self Management – 4 clear groups

• Patients who embraced the concept of self management

• Patients who reflected and dismissed self management

• Patients wanted to “dip their toes in the water”

• Patients who wanted more “knowledge about their bodily response”

Self management“I think it would be really helpful…

I think it’s having an understanding and more awareness of what you can do,

like treatments” Female, age 24 yrs, CD, diagnosed age 11 yrs

“I would certainly do that, yeah. I would rather...one of the worst things is, like I say, if

you can manage treatment at home I would rather do that at the first instance and instead

of having to come in” Male, age 58 yrs, UC, diagnosed age 48 yrs

“I mean …after all these years …I actually can manage it quite well”

Female age 54 yrs, CD, diagnosed age 36 yrs

One size doesn’t fit all

“I’ve been ill since I was so young… It has always been somebody else’s

responsibility...my body...and I’m not going to start now”

Female, age 32 yrs, CD, diagnosed age 14 yrs

“I’m not into self diagnosis and I’m not into self medication or self-management. So I’m not going to do anything off my own bat without having checked with some medical mind somewhere, I don’t want to be like I was before my

surgery” Male, age 72 yrs, CD, diagnosed age 32 yrs

GP care perspectives• Very difficult• Loss of confidence at diagnosis• Not offered the choice• Fear of discharge• Loss to follow-up• LES GP care

GP care“I would never go to my GP, he doesn’t have

the knowledge that the IBD team does.”Female, Aged 32

“It’s about experience and knowledge,and my GP doesn’t have that.”Male, Aged 27

“Yes, OK, aslong as I am still connect to here, this IBD team that sounds good,”. Female age 62

Patient interviews – key findings

Patients don't want to be seen when well

Frustrations with capacity in clinics- ‘its failing us’

More flexible approach, at point of need

Open access / pt initiatedMust ensure rapid access backSelf managementVirtual clinics – web based,

email, text, Apps, paper, phone

Don't want to be discharged from 2nd care

Accept GP care if still under 2nd care overall

Safeguard - close relationship Primary and Sec Care

‘Crisis line’ but more co-ordinatedIBD Nurse outreach clinics

Quiescent IBD Mild / moderate IBD

Discharge to LES GP with PCM plan

IBD Nurse at Primary and Secondary Care interface

Secondary Care for patients with complex IBD

Rapid access referral <7 days via GP Patient initiated rapid access referral <7 days

Paper clinics

Model of Follow up care for adult patients with inflammatory bowel disease

Severe IBD

Guided self management Guided self management Guided self management

Web based clinics

‘Virtual ‘ clinics Remains under secondary care management

*IBD patients will move within the three arms depending on disease state.Quiescent disease:Mild/moderate disease:Complex disease:

Change the way we workEffective management of patients with

LTCs requires comprehensive systems change that requires more

than adding new features to an unchanged system.

Increasing patient expectations

Direct Patient benefits

•Flexible, responsive to patient needs•Minimise face-to-face appointments where no clinical •No time off work unnecessarily•Skills to self-manage

•Access clinic as “rapid follow-up”•Increased capacity for complex IBD patients•Without compromised care•Ensure point of care at time of need•“Efficiency”

Quiescent IBD Mild / moderate IBD

Discharge to LES GP with PCM plan

IBD Nurse at Primary and Secondary Care interface

Secondary Care for patients with complex IBD

Rapid access referral <7 days via GP Patient initiated rapid access referral <7 days

Paper clinics

Model of Follow up care for adult patients with inflammatory bowel disease

Severe IBD

Guided self management Guided self management Guided self management

Web based clinics

‘Virtual ‘ clinics Remains under secondary care management

*IBD patients will move within the three arms depending on disease state.Quiescent disease:Mild/moderate disease:Complex disease: