Intervention

The intervention was developed in a participatory process. The participatory development process of the intervention included one-on-one interviews with former intensive care patients (n = 26) and with next of kin of former intensive care patients (n = 23, not necessarily belonging to the interviewed patients). Six focus group discussions (n = 41, average duration of 97 min) and six expert interviews were conducted to capture also the perspective of the health care professionals. In total, persons from nine different professions were interviewed, with one third of the participants being physicians, followed by nurses (23%) and physiotherapists (17%). In addition, a short online survey with 15 items was sent to the health care professionals (n=46).

This information was evaluated, summarised and integrated with evidence from the literature and evidence from claims data analysis to create a first draft of the intervention [35]. The further development of the intervention was then carried out in 2 workshops with 23 and 21 participants each, composed of different health care professionals (physicians, nurses, therapists) and scientists (involved authors of the paper: MR, SB, CB, CF, VB, MM, CA).

The first workshop was used for a rough conceptualisation based on intervention mapping, while the second workshop was used for further specification of the concept according to the design-thinking approach. The results of both workshops were distributed to all participants and interested parties for correction. The concept was then finalised and written down by the interdisciplinary project team consisting of physicians, scientists and nurses. This extensive development process was assumed to possibly increase the effectiveness of the intervention.

The intervention will contain three main components: information, consultation and networking (see Fig. ​Fig.4).4). The design and timing of the appointment(s) has been determined by focus group interviews and an online survey with health care professionals. Information to participants will be provided by a pamphlet (developed by ICU steps [36] and translated by Deutsche Sepsishilfe and German Society of Skilled Nursing and Functional Services e.V. (DGF) [37]). Further, patients will have the possibility to contact the ICU follow-up clinic team by telephone at any time during the intervention. Study participants and their next of kin will be encouraged to join two self-help group meetings. A self-help group meeting will include a short information talk on a topic that has previously been shown in the consultations in the ICU follow-up clinic to be important to most participants. The lecture will be given by a member of the ICU follow-up clinic or by an outpatient health care professional, depending on the selected topic. Afterwards, both the participants and their next of kin will have the opportunity to get to know each other and to share their experiences. Patients and their next of kin will meet in separate rooms. This is assumed to facilitate disclosure of possibly difficult situations patients or next of kin are experiencing during the caregiving process.

Main components of the ICU follow-up clinic

Consultation will be provided in appointments at the ICU follow-up clinic at least once at about 2 months post-ICU discharge: initially, a checklist will be completed to assess physical, mental, cognitive and social functioning. The checklist will be based on standardised questionnaires (Mini-Cog [38], PHQ-8 [39], GAD-7 [40], PTSS-10 [59]), physical examination (chair rise test [41] and hand grip strength [42]), medical check-up (including blood pressure and body weight) and structured questions asked by the study physician (including symptoms of dysphagia and neuropathy). Results from this screening checklist will be used by the study physician of the ICU follow-up clinic to guide further treatment and thus to select the appropriate medical specialties, for example. Later, participants and next of kin will have the opportunity to discuss their ICU experience and to visit the ICU. This procedure has the potential to prevent posttraumatic stress by reintegrating traumatic memories. Where indicated, participants will be referred to outpatient medical specialists and/or outpatient therapists (ergotherapists, psychotherapist, logopedics, physiotherapists). After each clinic visit, a referral letter of the ICU follow-up clinic will be written primarily to the treating general practitioner and discussed with the participant. All intervention treatments will use the standard health care system processes. If the participant is not mobile, the ICU follow-up clinic team will visit him or her at home. All parts of the assessment can also be conducted at the patients’ home. Only the study physician’s letter and any referrals are then sent to the patient by mail in case of a home visit. Following the appointment, participants will be monitored by phone (one or more times depending on their needs) by the study physician. The physician will first explore the patient’s general state of health and then will ask to what extent the recommended interventions have been accepted and implemented. Any physical, mental or cognitive impairment will be inquired according to several items addressed during the visit in the ICU follow-up clinic. Based on monitoring results, participants may be encouraged to visit the ICU follow-up clinic once more or to contact their general practitioner. The third component concerns the establishment of a network of health care professionals who agree to care for participants of the ICU follow-up clinic or to provide information to other health care professionals. Since PICS can affect all health-related domains of former intensive care patients, the members of the network should represent different professions, disciplines and health care sectors. The referral letter of the ICU follow-up clinic is also intended to promote cooperation with the physicians and therapists providing further treatment.