Intensive Care Syndrome: Promoting Independence and Return to Employment (InS:PIRE)

It is now well established that many patients ‏and caregivers suffer physical, psychological ‏and social problems in the years ‏and months following critical care discharge ‏(Herridge et al. 2011). Similar to many centres, ‏our intensive care unit (ICU) had no follow-up ‏service available to support patients through this ‏difficult recovery period (Griffiths et al. 2006). ‏To understand how best to create a service ‏that was safe, effective and person-centred, ‏two members of our multidisciplinary team ‏(MDT) undertook research programmes to ‏help identify the problems that patients faced ‏after ICU and to help understand the context ‏for change (Quasim et al. 2015; McPeake et ‏al. 2016).

From this work, four main challenges were ‏identified:

1. There is minimal evidence of how and ‏when rehabilitation services should ‏be delivered (Mehlhorn et al. 2010), ‏despite an abundance of literature ‏describing the issues for ICU survivors ‏and their families.
   
2. The hardships facing ICU patients ‏are often not apparent to hospital ‏management. Readmissions to hospital, ‏increased general practitioner (family ‏physician) visitations and the increased ‏reliance on welfare benefits are distributed ‏amongst a variety of budgets, ‏which do not necessarily appear related ‏to an ICU admission.
   
3. Finding staff with the time and ability ‏to do something new that is different ‏from their traditional ICU role can be ‏problematic.
   
4. Finding physical space with a suitable ‏area to hold a rehabilitation programme ‏can be difficult.
   

Patient-Focused Solutions

Simultaneously the team set up a Patient and ‏Family Council (PFAC). The PFAC was a group ‏of 10-12 previous patients and caregivers who ‏met bimonthly for approximately two hours. ‏This group, which was chaired by a patient or ‏caregiver, helped create potential solutions to ‏the problems encountered by ICU patients and ‏their loved ones.

Utilising peer support as a central component ‏for rehabilitation is gaining momentum ‏within the ICU community (Mikkelsen et al. ‏2016). By bringing together a heterogeneous ‏group of ICU survivors as part of our PFAC, ‏the positive effect of peer support was obvious. ‏Without exception, it was the first time ‏that they had spoken to someone with a shared ‏experience of the ICU.

What was also clear from this feedback was ‏that their desire to get home did not live up to ‏expectations. At around a month after hospital ‏discharge, patients realised that their individual ‏recovery was not what had been expected. It was ‏also very clear that both patients and caregivers ‏were frustrated that healthcare professionals and ‏indeed the general public did not understand ‏the difficulties in overcoming a critical illness. ‏In attempting to move forward, the team ‏were faced with the harsh reality that there is ‏limited funding to establish a new service. Not ‏unreasonably, most healthcare managers require ‏evidence of benefit before there is financial ‏investment.

In 2014 the Health Foundation, a UK charity, ‏advertised a series of innovation grants, the ‏Shine Awards. The team successfully applied ‏for one of these awards. The advantage of this ‏opportunity was that the MDT did not have ‏to have the finished, polished intervention and ‏thus were not limited to undertaking traditional ‏research methodologies. This was a ‘learning’ ‏grant, which allowed the team to develop a ‏new service and change things after learning ‏what worked and what didn’t.

See Also: PTSD Common in ICU Survivors 

InS:PIRE

Utilising the first hand experience of our Patient ‏and Family Council, the MDT co-created and ‏developed the concept of InS:PIRE (Intensive ‏Care Syndrome: Promoting Independence and ‏Return to Employment). InS:PIRE is a five-week, ‏peer-supported, self-management programme ‏aimed at empowering patients and relatives to ‏take control of their own health and wellbeing ‏by finding community resources to help them. ‏To ensure that we did not create a population ‏of ‘chronic’ ICU patients, the course was kept ‏deliberately short.

Every week there was a group exercise ‏class to stimulate peer support. To encourage ‏peer support further within the programme, InS:PIRE adopted patient and carer volunteer ‏roles. These roles were undertaken by ICU ‏survivors further along the recovery trajectory, ‏who could offer hope and support to patients ‏who were still struggling. To help encourage ‏cross-communication we set up a café area; ‏this allowed patients, staff and volunteers to ‏intermingle in a relaxed setting.

As well as the weekly physiotherapy class, ‏patients and caregivers had individual and ‏group sessions (Table 1). These included a ‏physiotherapy consultation to discuss pain, ‏musculoskeletal and balance issues. Patients ‏were then given an individualised programme ‏for their specific needs.

A pharmacy appointment was also provided ‏to ensure that an appropriate medicines reconciliation ‏had been undertaken. This was also ‏the opportunity for the pharmacist to educate ‏patients on what they were taking their medicines ‏for and how to take them properly. If ‏there were any issues, the pharmacist would ‏write to the GP or use the National Patient ‏Safety Foundation Framework Ask Me 3 (npsf. ‏org/?page=askme3) document to empower ‏patients to discuss their medication queries ‏independently.

At a nursing and medical session, the patient ‏was provided with a lay summary of their ICU ‏stay if they wanted it and offered the opportunity ‏to revisit the ICU. Personal goals were ‏set with the patient and caregiver by asking ‏simple questions such as “What can’t you do ‏now that you could do before ICU?” or “What ‏would you like to be doing in six months’ ‏time?” Personal outcomes were often centred ‏on issues such as driving, walking and using ‏public transport independently. We would break ‏these challenges into smaller tasks to make them ‏more achievable.

A group psychology session explored ‏‘coping’ strategies. We also provided patients ‏with information on how to seek further ‏psychological support in the community if ‏they felt this was necessary. We separated the ‏patients from relatives during the psychology ‏sessions as our PFAC felt this was important. ‏This is also reflected within the literature, which ‏demonstrates the challenges which caregivers ‏face during critical care recovery (Haines et ‏al. 2015). During the psychology session, ‏patients were able to ‘normalise’ their feelings ‏and express their concerns without causing ‏more anxiety for their relatives. For the carers, ‏it was a chance for them to offload exhaustion, ‏anger and frustration without feeling guilty. ‏This process appeared to offer this group an ‏enormous sense of relief.

The fifth and final week of InS:PIRE was ‏named the social prescription week. This session ‏signposted participants to community organisations ‏which might help their recovery. For ‏example, we looked at volunteering options as ‏a platform to return to work, community physiotherapy ‏classes or places that can help with ‏welfare issues. A fundamental aim of InS:PIRE ‏was to provide patients with the tools to take ‏control of their own health by using existing ‏community resources. Unless absolutely necessary, ‏patients were not referred back into the ‏hospital setting.

A vital part of this initial pilot of InS:PIRE ‏was the ‘learning week’, which included a ‏meeting of the entire health and social care ‏team involved in the delivery of InS:PIRE. From ‏this we could find out from patients, staff and ‏the volunteers what worked, what didn’t and ‏what we needed to change. An example of ‏this learning was in our first cohort where ‏attendance was initially low. We had phoned ‏patients a few days in advance to ask if they ‏were attending the clinic, but then often they ‏didn’t attend. When they were contacted to ask ‏why, it was because they didn’t realise what day ‏of the week it was. This is consistent with many ‏of the well-documented ongoing cognitive ‏problems which patients encounter following ‏critical care discharge (Iwashyna et al. 2010). ‏By contacting patients on the morning of the ‏clinic, attendance doubled. We also realised that ‏there was a risk of patients becoming dependent ‏on individual members of the team. As a result ‏of this learning, a generic email account and ‏phone number was created and utilised for all ‏patient interactions.

Learning from InS:PIRE

The positive difference in patients that the team ‏witnessed between the first and final week of ‏InS:PIRE was overwhelming. What was unexpected ‏was the effect InS:PIRE had on the staff ‏attending the clinic. Staff who had been in the ‏same job for decades were expanding their role ‏and working in a different way; they weren’t ‏defined by the role they had trained in. ‏

For patients the biggest issues which were ‏identified and supported during the programme ‏were social: housing; finances; relationships and ‏employment. The skills needed to support these issues were very different from the traditional ‏skill base of critical care practitioners. Cross-boundary ‏working became essential as well as ‏developing new skills for the team involved.

A strong theme which continued over the ‏year from the patients who attended InS:PIRE ‏was “Why does no-one know how difficult it is ‏for ICU patients who survive?” The term ‘Post ‏Intensive Care Syndrome (PICS) may appear to ‏be labelling patients. However, in our experience ‏patients and caregivers valued this terminology. ‏Many patients felt it ‘legitimised’ their ‏feelings and experiences after ICU and helped ‏validate their concerns.

 The Future

The team recognised that to help patients have ‏their voice heard and to highlight InS:PIRE ‏in the hope of securing further funding, we ‏had to publicise and disseminate learning as ‏widely as possible. We were extremely proud ‏and indeed grateful to have been awarded the ‏BMJ 2016 ‘Innovation into Practice’ award. It ‏allowed InS:PIRE to be in the public domain ‏at a very early stage.

InS:PIRE was co-produced with patients for ‏patients. Whilst the programme works in one ‏population, it needs to be evaluated in other ‏sites to understand if this model is safe and ‏effective at a larger scale. The InS:PIRE team has ‏recently been successful in obtaining further ‏funding from the Health Foundation to ‘Scale ‏and Spread’ the InS:PIRE model of care. Over ‏the next six months, InS:PIRE will be implemented ‏in four other health boards in Scotland. ‏The aim of this programme of research will ‏be to understand the impact of InS:PIRE for ‏patients on a larger scale. It will also seek to ‏understand how this complex intervention can ‏be implemented more widely.

A five-week cohort of InS:PIRE (including ‏a funded learning session) for 12 patients and ‏their carers costs approximately £9000. Our aim ‏is for InS:PIRE to become an established clinical ‏service. This will not be without challenges. ‏We have funding for the life of the aforementioned ‏Health Foundation grant and we will be ‏engaging with our executive board to secure ‏future finance. We are currently developing ‏a full economic evaluation of the project to ‏examine cost-effectiveness and help build a ‏strong business case.

 
Conclusion

Patients and caregivers face many challenges ‏in the months and years following critical ‏care discharge. The peer-supported model ‏of InS:PIRE appears to have some utility in ‏supporting this patient group. Future evaluation ‏on a larger scale is imminent and will ‏hopefully support the development of reliable ‏evidence to support this group of patients.

Abbreviations

EN enteral nutrition

ICU intensive care unit

ICU-AW ICU-acquired weakness

MPB muscle protein breakdown

MPS muscle protein synthesis

PN parenteral nutrition