Follow-up after intensive care

Follow-up after intensive care John A Griffiths FRCA MRCP MA Melanie Gager RGN Carl Waldmann FRCA EDIC MA Key points ICU follow-up provides insights into the quality of ICU care. ICU follow-up facilitates early identification of physical and psychological problems and referral to other specialties. ICU follow-up should benefit patients, their relatives and healthcare professionals. Morbidity and mortality after critical illness ‘There is more to life than measuring death’ of high quality care. Recent publications from the Audit Commission (Critical to Success) and the National Expert Group (Comprehensive Critical Care) have supported the development of follow-up for patients after a stay in ICU. Furthermore, ICU follow-up also provides a capacity to evaluate the quality and longterm impact of ICU care. This potential role was demonstrated by the success of the Audit Commission’s Relatives Satisfaction Survey. In 1993, a pioneering ICU follow-up clinic was started in Reading, UK. The service has been termed ‘Intensive After Care After Intensive Care’. Half-day, formal outpatient clinics occur twice monthly. The service is run jointly by a nursing sister and an ICU consultant. They are assisted by a staff nurse who works one day per week. Patients who remained in ICU for 4 days or more are followed-up from discharge at 2 months, 6 months and 1 yr. On average 8–10 patients are seen in each clinic. An efficient infrastructure, including clerical and IT support, is essential. Such a set up allows good collaboration with other hospital departments and GPs and ensures patients do not make unnecessary journeys to the hospital. Transport can easily be organized where necessary. The overall costs for 2002 were estimated at £30 000 (i.e. 1% of the ICU budget). Clinical Director Intensive Care Unit Royal Berkshire Hospital Reading RG1 5AN Tel: 01189 877249 Fax: 01189 877250 E-mail: cswald@aol.com (for correspondence) In 1989, the Kings Fund report emphasized the need to look at both morbidity and mortality after critical illness. To investigate this, a team from the University of York set out to determine the outcomes and costs of ICU treatment at six months. The report emphasized the importance of measuring outcome and survival at significantly longer times after ICU discharge than were currently practiced. For example, 14 day mortality was widely used as a marker of successful treatment. While it is true that for patients with sepsis most attributable mortality occurs early, studies have clearly demonstrated that the impact of sepsis on mortality extends well beyond 14 days. The more commonly used 28 day end-point in randomized controlled trials is more reasonable, but it still does not fully address the longerterm impact of critical illness. Therefore, extended ICU follow-up after hospital discharge is required to define ‘success’ or ‘failure’ of ICU care. Recently in the US, the Institute of Medicine published a report entitled Crossing The Quality Chasm. It challenges physicians to provide care that is safe, effective, efficient, timely, patient-centred and equitable. Most intensive care physicians have little knowledge of whether they are achieving these six elements 202 Continuing Education in Anaesthesia, Critical Care & Pain | Volume 4 Number 6 2004 ª The Board of Management and Trustees of the British Journal of Anaesthesia 2004 John A Griffiths FRCA MRCP MA Specialist Registrar Department of Anaesthetics Royal Berkshire Hospital Reading RG1 5AN Melanie Gager RGN Follow-up Sister Intensive Care Unit Royal Berkshire Hospital Reading RG1 5AN Carl Waldmann FRCA EDIC MA Assessing outcome after ICU Traditionally, the success of critical care has focused largely on mortality and assessment of the health of survivors in terms of physiological, radiological, and biochemical measurements of impairment. Objective measures, for example, the ability to return to work, have been used to gauge a patient’s quality of life. Such a measure could be inappropriate in a society of rising unemployment and an ageing population. Additionally, pulmonary function tests may be used to objectively assess dyspnoea, though it may be representative of a more global and generalized disability. Recently, there has been a move towards subjective measures of functional status such as perceived quality of life (PQOL), DOI 10.1093/bjaceaccp/mkh054 Downloaded from https://academic.oup.com/bjaed/article/4/6/202/314711 by guest on 26 April 2022 Relatively little is known about long-term outcomes in patients after ICU. Until recently, an intensive care unit (ICU) stay was deemed successful if a patient survived to go to the ward. Practitioners in neonatal medicine have always been concerned with the functional outcome of their infants. However, practitioners in adult intensive care have historically paid little attention to the long term outcomes of their patients. Also, little consideration was taken of the patient dying on the ward or soon after leaving hospital or indeed if the patient went home with an appalling quality of life. Follow-up after intensive care Table 1 Main generic and disease-specific measures of health-related quality of life that have been used in adult survivors of critical care Anxiety Depression PTSD CFS Perceived Quality of Life Scale (PQOL) Sickness Impact/Functional Profile (SIP/FLP) Nottingham Health Profile (NHP) Short Form-36 (SF-36) Rosser Disability and Distress Categories Spitzer Quality of Life Index Psychological General Well-Being Schedule (PGWB) Fernandez questionnaire Whiston Hospital questionnaire Sexual dysfunction Relationship difficulties Social withdrawal Specific problems after ICU admission Patients in ICU frequently have a broad range of physical and psychological problems. Therefore, the responsibility for looking after patients after intensive care can fall between many specialties. Following multi-organ dysfunction, it is difficult to categorize a patient to an individual specialty such as cardiac, respiratory or nephrology. Providing ICU follow-up allows a multisystem approach to the patient’s morbidities and allows appropriate referrals to be made. There is a broad and complex array of factors that contribute to a patient’s recovery from an episode of critical illness (Fig. 1). Painful joints Muscle wasting Reduced mobility Poor structural memory Sleep disturbance Subjective health deterioration Fig. 1 Examples of potential factors complicating recovery post intensive care. to a mixture of joint pain, stiffness and muscle weakness. Muscle wasting in the critically ill has many causes, including inadequate nutrition, neuropathic and myopathic processes, problems secondary to sepsis, and drug therapy. All are exacerbated by prolonged inactivity. Indeed, it has been shown that following ICU discharge, all ARDS survivors are cachectic, deconditioned and have lost 20% of their baseline weight. Important neuromuscular and skeletal sequelae that commonly contribute to the functional impairment sometimes seen in ARDS survivors include critical illness polyneuropathy, entrapment neuropathies, ICU-acquired myopathy and heterotopic ossification. Until now, there have been no specific rehabilitation programs for patients recovering from critical illness, whereas rehabilitation programs for heart attack, stroke and respiratory disease are well established. A recent three centre study has shown that a self-help, guided rehabilitation exercise program can speed up physical recovery after Intensive Care. Tracheostomy Skin Tracheostomy is frequently performed on ICU patients; it is no longer the exclusive preserve of surgeons and is increasingly being performed by intensivists using a number of percutaneous techniques. There can be minor cosmetic problems, such as tethering, which is easily dealt with in ENT outpatients under local anaesthetic. Other long-term sequelae have been assessed by lung function tests, nasendoscopy and MRI scaning. It is encouraging that percutaneous tracheostomy is associated less frequently with problems such as tracheal stenosis when compared with surgical tracheostomy. MRI assessment is requested routinely in all patients in the follow-up clinic in Reading in order to look for evidence of stenosis (narrowing >15%). Its incidence is low. Dermatological complaints are commonly encountered in ICU follow-up. These include a variety of non-specific disorders including rashes, hair loss or nail ridging. Reassurance is usually all that is needed. Severe pruritis, which can last for up to 6 months after intensive care, is common and difficult to treat. The use of some of the earlier starch solutions in ICU has been identified as a possible cause. More recent, improved formulations have minimized this complaint. Colonization with methicillin-resistant Staphylococcus aureus (MRSA) presents problems, and patients often require up to 9 months before they are clear of infection. Misunderstandings about the nature and source of MRSA have meant that it is common to find patients being treated as ‘lepers’ by their own family. Mobility Sexual dysfunction Full mobility is rarely regained before 9–12 months in ICU patients, even in the absence of trauma. This is usually attributable In a recent study, there was a 39% incidence of sexual dysfunction (less active before ICU admission) in a group of 57 patients Continuing Education in Anaesthesia, Critical Care & Pain | Volume 4 Number 6 2004 203 Downloaded from https://academic.oup.com/bjaed/article/4/6/202/314711 by guest on 26 April 2022 with data collected directly from patients during their follow-up appointment (Table 1). However, although some evidence for validity of these tests exist, rather less is known of their sensitivity and reliability. The importance of quality of life measures is demonstrated by a quotation from a survivor of ICU who participated in a recent ARDS follow-up study: ‘one thing I find somewhat alarming is that when they measure my lung capacity it measures 80%, which they consider normal so in a sense they’re telling me I’m fine now and there is nothing wrong with me. And yet I can’t do any of the things that I took for granted.’ Worsening premorbid condition Follow-up after intensive care Psychological problems Although the understanding of the impact of critical illness on the brain is rudimentary at best, the follow-up of patients post intensive care has provided some insight into the effect of this experience on brain function. Not surprisingly, brain dysfunction can manifest itself in a variety of ways, but disorders of memory and cognitive function, and an inability to concentrate are seen commonly. The majority of patients do not have a structured memory of their ICU stay. About 70% are unable to describe their stay and it is this gap in their life that many patients need to fill. The psychological impact of the experience may be formidable and it may be resented by the patient. A damaging patient misconception describes the memory of being ‘bagged’ as being put into a body bag rather than receiving a physiotherapy manoeuvre. Furthermore, it is common for patients to have memories of being trapped, unable to move easily, unable to see what is happening and of feeling intensely vulnerable. Longer-term sequelae that surface include high levels of anxiety, depression, post-traumatic stress disorder (PTSD) and chronic fatigue syndrome (CFS). Post-traumatic stress disorder PTSD is a normal reaction to severe stress and is comparative to a grief reaction after bereavement. Normally, it occurs in only 1% of the population and increases to 10% in victims of road traffic accidents and 65% in prisoners of war. About 15% of patients have the typical disorder after ICU, and in those recovering from ARDS, the incidence increases to 27.5%. PTSD consists of a triad of symptom complexes: intrusive unpleasant and unsettling flashbacks associated with emotional upset; subsequent avoidance of situations that tend to trigger these flashbacks; and finally an 204 increased level of alertness or chronic anxiety state. With effective screening and early referral with organized fast tracking the incidence of PTSD is dramatically reduced. Various strategies of dealing with the psychological sequelae of ICU stay have been tried. It has been shown that those patients with factual memories are less likely to develop PTSD type symptoms. Following on from this, in addition to three ICU follow-up clinic appointments in the year after their discharge, patients are encouraged to visit the ICU in Reading and, with the help of a retrospective diary, reconstruct the lost period of time in their life. Consideration is being given to producing patient photographic bedside commentaries as evidence of their time on the ICU in order to help them understand how ill they actually were. As a potential cathartic exercise, relatives are also encouraged to keep diaries. This potentially adds another dimension to the experience for the patient. Chronic fatigue syndrome Chronic fatigue syndrome has been used to describe the condition of many patients after ICU who have had a period of prolonged inactivity. It is diagnosed by the presence of fatigue at 6 months after ICU with impairment of daily living, social and leisure pursuits in the absence of a medically significant cause of fatigue. There is no doubt that a graded exercise programme is of benefit to aid physical recovery in such ICU patients. Community follow-up Increasing emphasis is being put on visiting patients in their home. Home visits allow the individual patient’s needs to be assessed and facilitate liaisons with GPs, District Nurses, Community Physiotherapists and Occupational Therapists. One of the many benefits gleaned from home visits is gaining an insight into what is and, perhaps more importantly, what is not available or accessible in the community. This need has been addressed in Reading with the provision of a service called the Intensive Community Support Service (ICSS). This service is a 6 week package incorporating physiotherapy, occupational therapy, social services and home help. Home visits also provide an opportunity to assess the patient and relatives in their own environment and to observe the impact of critical illness on family dynamics. There is no doubt that this early and continual support promotes effective rehabilitation, and hopefully leads to an improved quality of life and earlier re-integration back into the community. Conclusion There is no end to the surprises and unexpected problems that arise in patients after ICU. It is not unusual to come across patients initially deemed inappropriate for surgery and ICU who have survived the experience and recovered from their illness. Moreover, many of these patients have returned to an excellent quality of life. Unfortunately, at the present time, ICU follow-up clinics remain the exception rather than the rule, but their potential Continuing Education in Anaesthesia, Critical Care & Pain | Volume 4 Number 6 2004 Downloaded from https://academic.oup.com/bjaed/article/4/6/202/314711 by guest on 26 April 2022 followed-up after ICU admission. Even though it is a common finding after ICU, sexual dysfunction may go unrecognized and untreated despite a major impact on quality of life. People are often too embarrassed to mention the problem when they have recovered from a life-threatening illness. Withdrawing sexual intimacy because of fear of failure can cause marital difficulties and damage relationships. Sexual dysfunction is too frequently ascribed to psychological problems after ICU, and experience gained in this area in Reading has shown that this often is not the case. In investigating sexual dysfunction, it is important to eliminate causes such as pre-existing medical conditions (e.g. diabetes mellitus), the use of drugs (e.g. b-blockers, tricyclic antidepressants, antihypertensives, antipsychotics, antihistamines) and certain types of surgery (e.g. aortic aneurysm) or trauma/ radiotherapy to the pelvic region. Sexual dysfunction in men usually manifests itself as impotence or inability to maintain an erection sufficient for satisfactory sexual activity. There are now management guidelines for erectile dysfunction in the UK. In females, sexual dysfunction is not so well defined and is sometimes more difficult to diagnose. More commonly, there is a reduction in libido. Follow-up after intensive care importance continues to emerge. ICU follow-up can be used to outline the common problems encountered by patients during their recovery from critical illness. This information can be used to inform the design of studies investigating outcome of ICU management. Horowitz M J. Stress response syndromes—a review of post-traumatic stress and adjustment disorders. In: Wilson JP, Raphael B, eds. International Handbook of Traumatic Stress Syndromes. New York: Plenum Press, 1993; pp. 49–60 Jones C, Skirrow P, Griffiths R, et al. Rehabilitation after critical illness: a randomised, controlled trial. Critical Care Med 2003; 31: 2456–61 Kings Fund. Intensive care in the United Kingdom; a report from the Kings Fund Panel. Anaesthesia 1989; 44: 428–30 Key references Critical to Success. The Place of Efficient and Effective Critical Care Services within the Acute Hospital. London: Audit Commission, October 1999 Griffiths RD, Jones C. Intensive Care Aftercare, 1st Edn. Butterworth– Heinemann, 2002 Ralph D, McNicholas T. UK management guidelines for erectile dysfunction. Br Med J 2000; 321: 499–503 Ridley S, ed. Outcomes in Critical Care, 1st Edn. Butterworth–Heinemann, 2001 See multiple choice questions 154–156. Continuing Education in Anaesthesia, Critical Care & Pain | Volume 4 Number 6 2004 205 Downloaded from https://academic.oup.com/bjaed/article/4/6/202/314711 by guest on 26 April 2022 Comprehensive Critical Care. A Review of Adult Critical Care Services. Department of Health Publication, 2000 Surviving Intensive Care. In: Angus DC, Carlet J, eds. Update in Intensive Care and Emergency Medicine. Springer, 2003