Nada Andelic1, Helene L Soberg2, Svein Berntsen3, Solrun Sigurdardottir4, Cecilie Roe5. 1. Division of Surgery and Clinical Neuroscience, Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway; Institute of Health and Society, Research Centre for Habilitation and Rehabilitation Models and Services, Faculty of Medicine, University of Oslo, Oslo, Norway.∗; Division of Surgery and Clinical Neuroscience, Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway; Institute of Health and Society, Research Centre for Habilitation and Rehabilitation Models and Services, Faculty of Medicine, University of Oslo, Oslo, Norway†. Electronic address: nandelic@online.no. 2. Division of Surgery and Clinical Neuroscience, Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway; Institute of Health and Society, Research Centre for Habilitation and Rehabilitation Models and Services, Faculty of Medicine, University of Oslo, Oslo, Norway.∗; Division of Surgery and Clinical Neuroscience, Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway; Institute of Health and Society, Research Centre for Habilitation and Rehabilitation Models and Services, Faculty of Medicine, University of Oslo, Oslo, Norway† 3. Department of Physical Medicine and Rehabilitation, Sørlandet Hospital, Kristiansand, Norway‡ 4. Division of Surgery and Clinical Neuroscience, Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway; Institute of Health and Society, Research Centre for Habilitation and Rehabilitation Models and Services, Faculty of Medicine, University of Oslo, Oslo, Norway†; Institute of Health and Society, Research Centre for Habilitation and Rehabilitation Models and Services, Faculty of Medicine, University of Oslo, Oslo, Norway; Department of Research, Sunnaas Rehabilitation Hospital, Nesoddtangen, Norway§ 5. Division of Surgery and Clinical Neuroscience, Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway; Institute of Health and Society, Research Centre for Habilitation and Rehabilitation Models and Services, Faculty of Medicine, University of Oslo, Oslo, Norway.∗; Division of Surgery and Clinical Neuroscience, Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway; Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway||
Abstract
OBJECTIVE: To describe the self-perceived health care needs of patients with moderate-to-severe traumatic brain injury (TBI) and to assess the impact of the functional level at 1 year after injury on patients' unmet needs at the 5-year follow-up. DESIGN: A prospective follow-up study. SETTING: Clinical research. PARTICIPANTS: A total of 93 patients participated in the 5-year follow-up. METHODS: We registered demographic and injury-related data at the time of admission and the scores for the Disability Rating Scale, Glasgow Outcome Scale-Extended, and Short Form 36 subscales for physical functioning and mental health at 1 and 5 years. The patients' self-perceived health care needs and use of health care services at 5 years were the main outcome measurements. RESULTS: At the 5-year follow-up, 70% of patients reported at least 1 perceived need. The self-perceived health care needs were met for 39% of the patients. The patients with unmet needs (n = 29 [31%]) reported frequent needs in emotional (65%), vocational (62%), and cognitive (58%) domains. These patients were significantly more likely to present a less severe disability on the Disability Rating Scale at the 1-year follow-up (odds ratio [OR] 0.11 [95% confidence interval {CI}, 0.02-0.7]; P = .02). Worse mental health at the 1-year follow-up and a younger age (16-29 years) largely predicted unmet needs at the 5-year follow-up (OR 3.28 [95% CI, 1.1-10.04], P = .04; and OR 4.93 [95% CI, 0.16-15.2], P = .005, respectively). CONCLUSION: Gaps between self-perceived health care needs and health care services received at the 5-year follow-up were found. An important message to clinicians who provide health care services in the late TBI phase is that they should be aware of patients' long-term needs regarding cognitive and emotional difficulties. Of equal importance is an emphasis on long-term vocational rehabilitation services. To ensure the appropriateness of health care service delivery, health care services after TBI should be better targeted at less-severe TBI population as well.
OBJECTIVE: To describe the self-perceived health care needs of patients with moderate-to-severe traumatic brain injury (TBI) and to assess the impact of the functional level at 1 year after injury on patients' unmet needs at the 5-year follow-up. DESIGN: A prospective follow-up study. SETTING: Clinical research. PARTICIPANTS: A total of 93 patients participated in the 5-year follow-up. METHODS: We registered demographic and injury-related data at the time of admission and the scores for the Disability Rating Scale, Glasgow Outcome Scale-Extended, and Short Form 36 subscales for physical functioning and mental health at 1 and 5 years. The patients' self-perceived health care needs and use of health care services at 5 years were the main outcome measurements. RESULTS: At the 5-year follow-up, 70% of patients reported at least 1 perceived need. The self-perceived health care needs were met for 39% of the patients. The patients with unmet needs (n = 29 [31%]) reported frequent needs in emotional (65%), vocational (62%), and cognitive (58%) domains. These patients were significantly more likely to present a less severe disability on the Disability Rating Scale at the 1-year follow-up (odds ratio [OR] 0.11 [95% confidence interval {CI}, 0.02-0.7]; P = .02). Worse mental health at the 1-year follow-up and a younger age (16-29 years) largely predicted unmet needs at the 5-year follow-up (OR 3.28 [95% CI, 1.1-10.04], P = .04; and OR 4.93 [95% CI, 0.16-15.2], P = .005, respectively). CONCLUSION: Gaps between self-perceived health care needs and health care services received at the 5-year follow-up were found. An important message to clinicians who provide health care services in the late TBI phase is that they should be aware of patients' long-term needs regarding cognitive and emotional difficulties. Of equal importance is an emphasis on long-term vocational rehabilitation services. To ensure the appropriateness of health care service delivery, health care services after TBI should be better targeted at less-severe TBI population as well.
Authors: Isabel Rosalie Arianne Retel Helmrich; David van Klaveren; Nada Andelic; Hester Lingsma; Andrew Maas; David Menon; Suzanne Polinder; Cecilie Røe; Ewout W Steyerberg; Ernest Van Veen; Lindsay Wilson Journal: J Neurol Neurosurg Psychiatry Date: 2022-05-10 Impact factor: 13.654
Authors: Marleen R van Walsem; Emilie I Howe; Kristin Iversen; Jan C Frich; Nada Andelic Journal: Orphanet J Rare Dis Date: 2015-09-28 Impact factor: 4.123
Authors: Nada Andelic; Cecilie Røe; Olli Tenovuo; Philippe Azouvi; Helen Dawes; Marek Majdan; Jukka Ranta; Emilie I Howe; Eveline J A Wiegers; Cathrine Tverdal; Ida Borgen; Marit V Forslund; Ingerid Kleffelgaard; Hilde M Dahl; Louis Jacob; Mélanie Cogné; Juan Lu; Nicole von Steinbuechel; Marina Zeldovich Journal: J Clin Med Date: 2021-03-03 Impact factor: 4.241