Assessment and tools for follow-up of patients' recovery after Intensive Care

Abstract: Aim: The overall aim of this thesis was to describe and explore the use and content of ICU-diaries and to develop and psychometrically test a questionnaire to detect physical and psychosocial problems for ICU patients in their recovery process. Methods: This thesis is based on four studies. Study I had an explorative descriptive design with a quantitative and qualitative approach. Data were collected by telephone interviews with staff at Swedish ICUs (n = 65) which kept ICU-diaries. One question “what was the purpose of keeping ICU-diaries” was analysed with latent content analysis, and the other data were analysed with descriptive and comparative statistics. Study II had an explorative descriptive cohort design with a concurrent mixed method approach. The sample in study II was a part of the sample in study IV in which 421 former ICU patients responded to a new developed questionnaire 3-set 4P two months after discharge from ICU. Patients from this sample who have had an ICU-diary (n = 115) responded to a questionnaire six months after discharge from ICU. Fifteen patients were interviewed about the content and usefulness of the ICU-diary. Data were analysed with descriptive statistics, descriptively by content and interviews with manifest content analysis and then combined at the interpretive level to seek convergence, as enable by the mixed method approach. Study III had a methodological design. In this study, the questionnaire 3-set 4P was developed and psychometrically tested in a pilot setting. In study IV, the questionnaire was further developed and tested based on psychometric evaluation of the 3-set 4P. In study III the questionnaire was responded by 39 patients and in study IV by 421 patients. Data in study III and IV were analysed with descriptive statistics and psychometrical tests. Results: The main purpose for keeping ICU-diaries was to provide a tool in the recovery by helping the patient remember and give time back. Keeping ICU-diaries was common although there was a difference in practice and patient recruitment among different hospitals (study I). An ICU-diary with content and photos in a chronological order describing the whole picture of critical illness and ICU stay could be a tool for the patient to construct a coherent individual story. The ICU-diary could be one piece to give a deeper understanding and meaning in the personal story and to give a realistic expectation of the recovery process. Absence of guidelines for keeping ICU-diaries could affect the possibility for the ICU-diary to be a helpful tool during the recovery process (study II). In study III, the 3-set 4P was developed to be used for identifying and evaluating former ICU patients’ physical, psychosocial problems and outcome during follow-up. The psychometrical tests showed acceptable validity and internal consistency reliability. The stability reliability was acceptable in two of three sets. The psychometrical tests of the further modified version of 3-set 4P in study IV showed good construct validity and internal consistency but it needs some modification before it can be used in clinical practice (study IV). Conclusion: Recovery can be a difficult process where different tools can be useful. Today there is no evidence about tools to use during follow-up. To promote high quality of the follow-up there is a need for evidence-based guidelines. The ICU-diary is one tool but this thesis shows that guidelines for keeping ICU-diaries have to be developed to meet the patients’ wishes in order for the ICU-diary to become a useful tool during the process to recovery. The 3-set 4P can after some modification be used at the follow-up clinic to identify the individual patient’s problems and create an individual program for recovery.