Chapter 8 Common problems after ICU

Until recently, an intensive care unit (ICU) stay was deemed successful if a patient survived to go to the ward. No 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.

Mortality figures for patients leaving our own ICU recently are shown in Figure 8.1.

Figure 8.1 Mortality rates for leaving the intensive care unit (ICU).

A Kings Fund report ¹ in 1989 concluded that it was necessary to look at the morbidity following critical illness as well as mortality: ‘There is more to life than measuring death’.

Publications such as that of the Audit Commission (Critical to Success)² and that of the National Expert Group³ (Comprehensive Critical Care) have supported the development of follow-up for patients following a stay in intensive care. In 2007, the National Institute for Clinical Excellence (NICE) began to take an interest in the rehabilitation of critically ill patients and it is hoped will make recommendations to facilitate the introduction of follow-up programmes in all hospitals looking after critically ill patients.

In Reading, a follow-up programme has been ongoing since 1993. Until recently the rehabilitation of patients after a critical illness has fallen between too many stools. Following multiorgan dysfunction, it is difficult to categorise a patient to an individual specialty such as cardiac, respiratory or the stroke rehabilitation teams. Family doctors often have difficulty taking on the complexity of these patients, with the result that they are denied vital advice and assistance and lack an advocate with ‘teeth’ to ensure timely help.

SETTING UP A FOLLOW-UP SERVICE

Funding such a follow-up programme has posed local problems in many trusts. The service in Reading was initially approved and funded by local then regional audit committees.

The service is staffed by a follow-up sister who spends most of her time in this role helped by a staff nurse and an ICU consultant for the clinics held as a formal outpatient clinic 2/3 times monthly.

Patients who were in ICU for more than 4 days are seen in clinic at 2 months, 6 months and 1 year after discharge and, occasionally, we see patients who have been in ICU for a shorter time period and we also see referrals from other hospitals where follow-up isn’t happening. It is important to identify clerical and IT support, and to achieve good collaboration with other hospital departments and general practitioners (GPs) to ensure patients do not make unnecessary journeys to the hospital, by trying to coordinate their visits and ensuring that transport is organised where necessary. Very often, patients will voluntarily come from long distances if they had initially been admitted from other geographical locations – out-of-area transfers.

The logistics of running the service include arranging specific tests that may be required for the visit, such as pulmonary function tests, swabs for methicillin-resistant Staphylococcus aureus (MRSA), blood/urine for creatinine clearance. There may be special tests such as magnetic resonance imaging (MRI)⁴ for patients who had a tracheostomy during their stay in ICU.

The service in Reading costs £30 000 annually which, in the context of the bigger picture (£4.5 million budget for our ICU), is a small price to pay (Figure 8.2). An unexpected bonus is that the clinic is often seen by the patients as a convenient place to make donations to the ICU.

Figure 8.2 Costs of running a service.

SPECIFIC PROBLEMS POST-ICU

The range of problems seen after intensive care is vast and ranges from nightmares and sleep disturbance through to ill-fitting clothes. Many of the problems are very specific to the individual but there are also recurrent themes. Flashbacks are common, as are taste loss, poor appetite, nail and hair disorders and sexual dysfunction.

There are several quality-of-life tools used in follow-up studies (Table 8.1). Objective measurements may be inappropriate because they look at aspects such as return to work: often, patients in their 50s may not return to work after a traumatic episode, including ICU, and subjective measures would be more applicable, such as Perceived Quality Of Life (PQOL).

Table 8.1 Quality-of-life tool examples

Objective
QALY	Quality of Life tool⁵
Subjective
HAD	Hospital Anxiety and Depression⁶
PQOL	Perceived Quality of Life⁷
EuroQol	‘European’ tool⁸
SF 36	36-item short-form survey⁹

TRACHEOSTOMY

Since percutaneous techniques performed by intensivists started to replace surgical tracheostomy in 1991, we have seen an increasing number of patients tracheostomised earlier in their ICU stay.

The long-term sequelae have been assessed by lung function tests, nasoendoscopy and MRI screening (Figure 8.3). There are minor cosmetic problems, such as tethering (Figure 8.4). Tethering is easily dealt with in ear, nose and throat outpatients under local anaesthetic.

Figure 8.3 Assessment of long-term sequelae.

Figure 8.4 Tethering.

More difficult to manage is tracheal stenosis, defined as a 15% reduction in tracheal diameter. However, there have only been two cases to date. These were seen in the first series of 30 cases.⁴

MOBILITY

Even in the absence of trauma, patients can expect to need 9 months to 1 year to regain full mobility. This is usually due to a mixture of joint pain, stiffness and muscle weakness. In one study,¹⁰ the duration of ICU stay was associated with mobility problems probably associated with loss of muscle mass. If questioned, patients will often report climbing stairs on all fours and descending on their bottoms (Figure 8.5). Muscle wasting can present as a severe localised problem.

Figure 8.5 Climbing and descending stairs.

This may be associated with critical illness polyneuropathy (CIP),¹¹ which not only prolongs ventilatory weaning but frequently both complicates and delays rehabilitation. Muscle relaxants have been implicated in the development of CIP¹² but have not been shown to be statistically significant in terms of delayed weaning of intermittent positive-pressure ventilation and duration of stay in ICU.¹³

Until now, there have been no specific rehabilitation programmes for patients recovering from critical illness, although rehabilitation programmes for heart attack, stroke and respiratory disease are well established. A three-centre study has shown that a self-help physiotherapy guided rehabilitation exercise programme will speed up physical recovery after intensive care.¹⁴

It is important for a member of the team to try and spend time with patients at their homes to assess their special needs and liaise with the GPs, district nurses, community physiotherapists and occupational therapists.

SKIN

Patients complain of a variety of non-specific disorders, including hair loss and nail ridging. Severe pruritus used to be common and not amenable to treatment and was traced back to the use of high-molecular-weight starch solutions in ICU. Described in 2000,¹⁵ in 85 cardiac surgical patients, pruritus was absent in the 26 patients who did not receive starch, but there was a 22% incidence in the 59 patients who did receive starch. This is now supposedly less of a problem with the newer starches.

Colonisation with MRSA often persists for up to 9 months or longer (Figure 8.6). It is common to hear that patients are being treated as ‘lepers’ by their own family.

Figure 8.6 Colonisation with methicillin-resistant Staphylococcus aureus (MRSA).

SEXUAL DYSFUNCTION

Any patients who estimate their sex-life activity to be less active than before ICU admission are deemed to have sexual dysfunction.

In a group of 57 patients,¹⁶ there was a 39% incidence of sexual dysfunction, although in 4 patients, sex life had improved. Sexual dysfunction improves with time, from a frequency of about 26% at 2 months post-ICU down to 16% at 1 year.¹⁷ Sexual dysfunction is often thought to be a psychological problem but, interestingly, following severe burns, it has been reported that there is no correlation between the incidence of posttraumatic stress syndrome and sexual dysfunction.¹⁸ Nevertheless, withdrawing sexual intimacy because of fear of failure can damage relationships. Often sexual dysfunction may go untreated because people are too embarrassed to mention the problem when they have recovered from a life-threatening illness.

Sexual dysfunction affects both men and women. In men it usually manifests itself as impotence or inability to maintain an erection sufficient for satisfactory sexual activity. For management guidelines for erectile dysfunction, see Ralph and McNicholas.¹⁹

In investigating sexual dysfunction, it is important to eliminate causes such as the use of drugs e.g. L-dopa and H₂-blockers and certain types of surgery (aortic aneurysm) or trauma/radiotherapy to the pelvic region. The patients may be diabetic.

Treatments available include intracavernous or transureteral alprostadil or oral Viagra. Patients with cardiovascular dysfunction have to be carefully assessed before being given Viagra. Non-pharmacological therapies include the use of vacuum devices and inflatable penile prostheses.

In females, sexual dysfunction may occur due to surgery or trauma to the pelvis. More commonly, there is a reduction in desire. Various lubricating gels can be used. As yet, the role of Viagra for women has to be determined. In 127 patients asked to fill in a questionnaire while attending the clinic, the incidence of sexual dysfunction was 45%.²⁰ There was no link with gender but there was a close association with posttraumatic stress disorder (PTSD).

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