Urban Vitality

Former intensive care patients no longer on their own at home

Specialised care teams are ready to help former intensive care patients when they return home

22 Jun 2020 14:13 | Urban Vitality

Patients returning home after a stay in intensive care are overwhelmed by a great sense of uncertainty. How will their recovery go from here? Fortunately, they are no longer on their own. From now on, patients in the Amsterdam-Amstelland, Gooi and Flevoland regions will be cared for immediately after returning home by a team of specialised healthcare providers, consisting of a physiotherapist, an occupational therapist and a dietician. This initiative, set up by professor Marike van der Schaaf (AUAS and Amsterdam UMC) and Physiotherapy researcher Mel Major, is already proving to be effective.

A total of about 60 former intensive care patients, including many former COVID-19 patients, have received aftercare from specialised healthcare providers since returning home. This turns out to be a big improvement for a group of patients that used to feel very insecure. Until recently, post-intensive care syndrome (PICS) often went unrecognised, and no structural aftercare had yet been arranged for former intensive care patients returning home from hospital.

The REACH network of healthcare providers, which is now supporting former intensive care patients immediately, was set up by professor Marike van der Schaaf and doctorate student of Physiotherapy Mel Major. Two years ago, they made an inventory of what was missing in the care for former intensive care patients, and they recently trained healthcare providers from various disciplines in post-intensive care problems. Read more about their research.

Old situation: be assertive yourself

“Before this, not much had been arranged for patients returning home after intensive care,” Mel Major explains. “Although they received a referral letter from the hospital, they had to be assertive enough to find a physiotherapist themselves.” But that is not an easy task: it is important to find a physiotherapist who knows a lot about intensive care issues. “It’s easy to overburden former intensive care patients,” says Major.

Dieticians were not part of the standard referrals either, but play an essential role in recovery. Major: “Some 80 percent of intensive care patients on ventilators were found to be malnourished when they returned home. People lose as much as 7 to 10 kg in weight during their stay in intensive care. Sometimes people think this is good news; for example, former-COVID-19 patients who were a little overweight before hospitalisation. But most of the weight loss is muscle mass; and you don’t simply gain that back through exercise.”

A specialised dietician is therefore indispensable for measuring body composition, and for determining which nutritional needs must be met in order to support rehabilitation. Major: “If the patient starts exercising without adjusting his/her diet accordingly, things could go very wrong.”

Marike van der Schaaf and Mel Major (right)

Small amount of energy

Finally, a specialised occupational therapist is also essential and comes into play once the former intensive care patient notices that he/she isn’t back to himself/herself cognitively. Patients often encounter this after three to six months, when their employers put pressure on them to return to work. And yet these patients often have difficulty remembering things properly, and are not at all ready to function at their old level.

Something else former intensive care patients have to deal with is the fact that they have very little energy. The occupational therapist helps them to deal with this. How tiring activities are is also very unpredictable. Major: “Someone may feel full of energy when they get up in the morning, but feel worn out again after vacuuming or a phone call. You only have a small amount of energy to get you through the day. The occupational therapist offers help and practical solutions in this respect, enabling people to go shopping or do other activities that are important to them.”

Results: patients physically stronger and more satisfied

The new form of aftercare for former intensive care patients, with a specialised physiotherapist, dietician and occupational therapist, is proving to be a success. Preliminary analyses among the participants in the REACH study show that, after six months, they are physically stronger than the patients in the control group, who rehabilitate without a specialised care team. The participants followed include many former COVID-19 patients.

Mel Major follows the participants in the study for six months and measures factors such as the condition of the respiratory muscles, endurance and grip strength. Participants also complete questionnaires about anxiety, trauma, depression and perceived health. If necessary, a psychologist is involved as well. The patient’s needs are always paramount: he/she determines what care is needed and which specialised healthcare providers will be involved in the recovery.

The participants in the REACH programme are very satisfied with the care provided in comparison with the control group (consisting of patients who rehabilitate with their own therapist, patients without a therapist and patients in a rehabilitation centre).

Some 60 healthcare providers in the Amsterdam-Amstelland, Gooi and Flevoland regions have now been trained as part of the REACH study, and over 30 healthcare institutions (practices and hospitals) are now referring patients to the network. Cooperation between healthcare providers in the REACH network is very efficient, which is why the aim is to expand the network to the rest of the Netherlands.

Want to know more? Contact Mel Major, Physiotherapy researcher: m.major@hva.nl or +31 (0)6-211 585 55.