Case management after acquired brain injury compared to care as usual: study protocol for a two-year pragmatic randomized controlled trial

Abstract Background: People with acquired brain injury may suffer from cognitive, emotional and behavioural changes in the long term. Continuity of care is often lacking, leading to a variety of unmet needs and hindering psychosocial functioning from the occurrence of brain injury up to years thereafter. Case management aims to prevent (escalation of) problems and to facilitate timely access to appropriate services. In other populations, case management has shown to improve psychosocial well-being. In this study, we aim to evaluate the feasibility of case management after acquired brain injury and its effectiveness and cost-effectiveness, compared to care as usual.Methods: This is a pragmatic randomized controlled study with repeated measures in adults with ABI and their family, taking place between November 2019 and December 2021 in three provinces in the Netherlands. Participants will be randomly allocated to either the case management group, receiving case management from hospital discharge up to two years thereafter, or the control group, receiving care as usual. Effectiveness will be evaluated every six months for 18-24 months by patient-reported psychosocial well-being (Hospital Anxiety and Depression Scale (HADS), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) restriction subscale and the Life Satisfaction Questionnaire (LiSat)), self-management (Patient Activation Measure (PAM)) and care needs (Longer-term Unmet Needs after Stroke (LUNS)). Family outcomes include self-efficacy (Carer Self-Efficacy Scale (CSES)), caregiver burden (Caregiver Strain Index (CSI)), psychosocial well-being (LiSat, HADS), family needs (Family Needs Questionnaire (FNQ)). Feasibility will be evaluated using qualitative methods, assessing fidelity, dose delivered, dose received, reach, recruitment and context. Cost-effectiveness will be determined by the EQ-5D-3L and service use.Discussion: At the moment there is no integrated health care service for people with acquired brain injury and their family members in the long-term. If case management is shown to be feasible and (cost)-effective, it could bridge the gap between patients’ and families’ needs and the available services.Trial registration: Netherlands Trial Register, NL8104. Registered 22 October 2019, https://www.trialregister.nl/trial/8104.

Download Full-text

Case management after acquired brain injury compared to care as usual: study protocol for a two-year pragmatic randomized controlled trial

10.21203/rs.3.rs-29724/v2 ◽

2020 ◽

Author(s):

Annemarie Stiekema ◽

Christine Resch ◽

Mireille Donkervoort ◽

Natska Jansen ◽

Kitty HM Jurrius ◽

...

Keyword(s):

Cost Effectiveness ◽

Brain Injury ◽

Case Management ◽

Self Efficacy ◽

Unmet Needs ◽

Acquired Brain Injury ◽

Well Being ◽

Family Needs ◽

Randomized Controlled

Abstract Background: People with acquired brain injury may suffer from cognitive, emotional and behavioural changes in the long term. Continuity of care is often lacking, leading to a variety of unmet needs and hindering psychosocial functioning from the occurrence of brain injury up to years thereafter. Case management aims to prevent (escalation of) problems and to facilitate timely access to appropriate services. In other populations, case management has shown to improve psychosocial well-being. In this study, we aim to evaluate the feasibility of case management after acquired brain injury and its effectiveness and cost-effectiveness, compared to care as usual. Methods: This is a pragmatic randomized controlled study with repeated measures in adults with ABI and their family, taking place between November 2019 and December 2021 in three provinces in the Netherlands. Participants will be randomly allocated to either the case management group, receiving case management from hospital discharge up to two years thereafter, or the control group, receiving care as usual. Effectiveness will be evaluated every six months for 18-24 months by patient-reported psychosocial well-being (Hospital Anxiety and Depression Scale (HADS), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) restriction subscale and the Life Satisfaction Questionnaire (LiSat)), self-management (Patient Activation Measure (PAM)) and care needs (Longer-term Unmet Needs after Stroke (LUNS)). Family outcomes include self-efficacy (Carer Self-Efficacy Scale (CSES)), caregiver burden (Caregiver Strain Index (CSI)), psychosocial well-being (LiSat, HADS), family needs (Family Needs Questionnaire (FNQ)). Feasibility will be evaluated using qualitative methods, assessing fidelity, dose delivered, dose received, reach, recruitment and context. Cost-effectiveness will be determined by the EQ-5D-3L and service use.Discussion: At the moment there is no integrated health care service for people with acquired brain injury and their family members in the long-term. If case management is shown to be feasible and (cost)-effective, it could bridge the gap between patients’ and families’ needs and the available services. Trial registration: Netherlands Trial Register, NL8104. Registered 22 October 2019, https://www.trialregister.nl/trial/8104.

Download Full-text

Case management after acquired brain injury compared to care as usual: study protocol for a 2-year pragmatic randomized controlled superiority trial with two parallel groups

Trials ◽

10.1186/s13063-020-04804-2 ◽

2020 ◽

Vol 21 (1) ◽

Author(s):

Annemarie P. M. Stiekema ◽

Christine Resch ◽

Mireille Donkervoort ◽

Natska Jansen ◽

Kitty H. M. Jurrius ◽

...

Keyword(s):

Cost Effectiveness ◽

Brain Injury ◽

Case Management ◽

Unmet Needs ◽

Acquired Brain Injury ◽

Well Being ◽

Family Needs ◽

Randomized Controlled ◽

Superiority Trial

Abstract Background People with acquired brain injury may suffer from cognitive, emotional and behavioural changes in the long term. Continuity of care is often lacking, leading to a variety of unmet needs and hindering psychosocial functioning from the occurrence of brain injury up to years thereafter. Case management aims to prevent (escalation of) problems and to facilitate timely access to appropriate services. In other populations, case management has shown to improve psychosocial well-being. In this study, we aim to evaluate the feasibility of case management after acquired brain injury and its effectiveness and cost-effectiveness, compared to care as usual. Methods This is a pragmatic randomized controlled superiority trial with two parallel groups and repeated measures in adults with ABI and their family, taking place between November 2019 and December 2021 in three provinces in the Netherlands. Participants will be randomly allocated to either the case management group, receiving case management from hospital discharge up to 2 years thereafter, or the control group, receiving care as usual. Effectiveness will be evaluated every 6 months for 18–24 months by patient-reported psychosocial well-being (Hospital Anxiety and Depression Scale (HADS), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) restriction subscale and the Life Satisfaction Questionnaire (LiSat)), self-management (Patient Activation Measure (PAM)) and care needs (Longer-term Unmet Needs after Stroke (LUNS)). Family outcomes include self-efficacy (Carer Self-Efficacy Scale (CSES)), caregiver burden (Caregiver Strain Index (CSI)), psychosocial well-being (LiSat, HADS), family needs (Family Needs Questionnaire (FNQ)). Feasibility will be evaluated using qualitative methods, assessing fidelity, dose delivered, dose received, reach, recruitment and context. Cost-effectiveness will be determined by the EQ-5D-3L and service use. Discussion At the moment, there is no integrated health care service for people with acquired brain injury and their family members in the long term. If case management is shown to be feasible and (cost)-effective, it could bridge the gap between patients’ and families’ needs and the available services. Trial registration Netherlands Trial Register NL8104. Registered on 22 October 2019.

Download Full-text

Case management after acquired brain injury compared to care as usual: study protocol for a two-year pragmatic randomized controlled superiority trial with two parallel groups

10.21203/rs.3.rs-29724/v3 ◽

2020 ◽

Author(s):

Annemarie Stiekema ◽

Christine Resch ◽

Mireille Donkervoort ◽

Natska Jansen ◽

Kitty HM Jurrius ◽

...

Keyword(s):

Cost Effectiveness ◽

Brain Injury ◽

Case Management ◽

Unmet Needs ◽

Acquired Brain Injury ◽

Well Being ◽

Family Needs ◽

Randomized Controlled ◽

Superiority Trial

Abstract Background: People with acquired brain injury may suffer from cognitive, emotional and behavioural changes in the long term. Continuity of care is often lacking, leading to a variety of unmet needs and hindering psychosocial functioning from the occurrence of brain injury up to years thereafter. Case management aims to prevent (escalation of) problems and to facilitate timely access to appropriate services. In other populations, case management has shown to improve psychosocial well-being. In this study, we aim to evaluate the feasibility of case management after acquired brain injury and its effectiveness and cost-effectiveness, compared to care as usual. Methods: This is a pragmatic randomized controlled superiority trial with two parallel groups and repeated measures in adults with ABI and their family, taking place between November 2019 and December 2021 in three provinces in the Netherlands. Participants will be randomly allocated to either the case management group, receiving case management from hospital discharge up to two years thereafter, or the control group, receiving care as usual. Effectiveness will be evaluated every six months for 18-24 months by patient-reported psychosocial well-being (Hospital Anxiety and Depression Scale (HADS), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) restriction subscale and the Life Satisfaction Questionnaire (LiSat)), self-management (Patient Activation Measure (PAM)) and care needs (Longer-term Unmet Needs after Stroke (LUNS)). Family outcomes include self-efficacy (Carer Self-Efficacy Scale (CSES)), caregiver burden (Caregiver Strain Index (CSI)), psychosocial well-being (LiSat, HADS), family needs (Family Needs Questionnaire (FNQ)). Feasibility will be evaluated using qualitative methods, assessing fidelity, dose delivered, dose received, reach, recruitment and context. Cost-effectiveness will be determined by the EQ-5D-3L and service use.Discussion: At the moment there is no integrated health care service for people with acquired brain injury and their family members in the long-term. If case management is shown to be feasible and (cost)-effective, it could bridge the gap between patients’ and families’ needs and the available services. Trial registration: Netherlands Trial Register, NL8104. Registered 22 October 2019, https://www.trialregister.nl/trial/8104.

Download Full-text

Quality of life in patients with mild acute brain injury and their carers’ needs in Greece

Clinical Nursing Studies ◽

10.5430/cns.v9n1p39 ◽

2021 ◽

Vol 9 (1) ◽

pp. 39

Author(s):

Evgenia Stasinopoulou ◽

Margarita Giannakopoulou ◽

Georgios Fildisis ◽

Maria Kalafati ◽

Chryssoula Leomonidou

Keyword(s):

Quality Of Life ◽

Brain Injury ◽

Social Life ◽

Well Being ◽

Acute Brain Injury ◽

Support Network ◽

Family Needs ◽

Rehabilitation Centers

Background: Investigating quality of life (QoL) is of crucial importance for the scientific community as it could function not only as an indicator of prognosis and post-traumatic clinical and psychological changes in patients who have suffered from acute brain injury (ABI), but also as an indicator of the effectiveness of their treatment and social rehabilitation. In addition, it can highlight changes in the carer’s health, social life and well-being. This study examined the QoL of patients following ABI and the needs of their carers.Material and methodology: This study was conducted in patients suffering from ABI, who were admitted to the General Hospital of Attica “KAT” and to the National Rehabilitation Center and on their carers. Data collection including demographics and Quality of Life After Brain Injury Questionnaire (QOLIBRI) and the Family Needs Questionnaire (FNQ) was performed during patients’ rehabilitation, while six months after release, a follow-up survey was conducted using the same questionnaires. Statistical analysis of data was performed using SPSS.Results: We analysed 50 patients with mild ABI (GCS ≥ of 13/15) during rehabilitation and six months after release and found that their QoL improves and is positively related to improvement of health status (i.e. in terms of thinking ability, QoL improves from r = 2.33, p < .01 to r = 3.37, p < .001). We also found that “Age” has the greatest impact on the patient’s progress for recovery and the general QoL after ABI (r = -0.423, p < .01). In addition, it was found that carers of patients with ABI are confronted with the burden of care, while they record both fulfilled and unmet needs regarding their individual needs (i.e. only for 30% of the sample the need for help in preparing them for the worst is met).Conclusions: Our study confirms previous findings that underline that ABI has a major impact on QoL of both patients and their carers providing them with long-term daily care. Although it has been found that over time there is an improvement in the QoL of patients with ABI, the absence of an official support network for carers from public health system, hospitals and rehabilitation centers may adversely affect the QoL of patients and their carers. Therefore, more structured, long-term family-wide monitoring and support is needed, focusing on identifying those at risk of social isolation and incomplete social networking.

Download Full-text

The BrainACT study: acceptance and commitment therapy for depressive and anxiety symptoms following acquired brain injury: study protocol for a randomized controlled trial

Trials ◽

10.1186/s13063-019-3952-9 ◽

2019 ◽

Vol 20 (1) ◽

Cited By ~ 1

Author(s):

Johanne Rauwenhoff ◽

Frenk Peeters ◽

Yvonne Bol ◽

Caroline Van Heugten

Keyword(s):

Depressive Symptoms ◽

Brain Injury ◽

Acceptance And Commitment Therapy ◽

Depression Scale ◽

Acquired Brain Injury ◽

Well Being ◽

Randomized Controlled ◽

Commitment Therapy ◽

Acceptance And Commitment ◽

Number Of Patients

Abstract Background Following an acquired brain injury, individuals frequently experience anxiety and/or depressive symptoms. However, current treatments for these symptoms are not very effective. A promising treatment is acceptance and commitment therapy (ACT), which is a third-wave behavioural therapy. The primary goal of this therapy is not to reduce symptoms, but to improve psychological flexibility and general well-being, which may be accompanied by a reduction in symptom severity. The aim of this study is to investigate the effectiveness of an adapted ACT intervention (BrainACT) in people with acquired brain injury who experience anxiety and/or depressive symptoms. Methods The study is a multicenter, randomized, controlled, two-arm parallel trial. In total, 94 patients who survive a stroke or traumatic brain injury will be randomized into an ACT or control (i.e. psycho-education and relaxation) intervention. The primary outcome measures are the Hospital Anxiety and Depression Scale and the Depression Anxiety Stress Scale. Outcomes will be assessed by trained assessors, blinded to treatment condition, pre-treatment, during treatment, post-treatment, and at 7 and 12 months. Discussion This study will contribute to the existing knowledge on how to treat psychological distress following acquired brain injury. If effective, BrainACT could be implemented in clinical practice and potentially help a large number of patients with acquired brain injury. Trial registration Dutch Trial Register, NL691, NTR 7111. Registered on 26 March 2018. https://www.trialregister.nl/trial/6916.

Download Full-text

Perceptions of Long-term Community-based Support Following Severe Acquired Brain Injury

Brain Impairment ◽

10.1375/brim.5.1.53.35407 ◽

2004 ◽

Vol 5 (1) ◽

pp. 53-66 ◽

Cited By ~ 8

Author(s):

Tamara Ownsworth ◽

Merrill Turpin ◽

Glenys Carlson ◽

Julie-Anne Brennan

Keyword(s):

Brain Injury ◽

Acquired Brain Injury ◽

Well Being ◽

Effective Area ◽

Structured Interview ◽

Support Needs ◽

Individual Choice ◽

Community Based ◽

Severe Acquired Brain Injury

AbstractMany individuals require long-term community-based support following acquired brain injury (ABI). However, very few studies have examined individuals' perceptions of these support needs. The present exploratory study examined individuals' perceptions of community-based support following severe ABI. Participants included eight individuals (aged 20–48 years) with severe ABI, seven relatives and three case managers. The individuals were receiving long-term specialised lifestyle support ranging from 3–70 hours per week. A structured interview with open and closed questions was developed to explore perceptions of individuals' support needs across the areas of personal and home-based activities, community-based activities, self-organisation and vocational activities and social and psychological well-being. The questions investigated whether support was needed, the importance of support, the sources of support, the effectiveness of support and the need for change. A comparison of the three respondent groups' perceptions of support indicated a general consensus that community-based activities were the most important and most effective area of support. When the issues raised by the three respondent groups were compared and contrasted two main themes emerged from the data, which were labelled “relationships” and “individual choice versus support needs”. These themes are discussed in relation to the provision of long-term community-based support services following ABI.

Download Full-text

An Australian Survey of the Clinical Practice Patterns of Case Management for Clients with Brain Injury

Brain Impairment ◽

10.1017/brimp.2012.19 ◽

2012 ◽

Vol 13 (2) ◽

pp. 228-237 ◽

Cited By ~ 3

Author(s):

Natasha Lannin ◽

Kareena Henry ◽

Michelle Turnbull ◽

Megan Elder ◽

Josephine Campisi

Keyword(s):

Professional Development ◽

Brain Injury ◽

Case Management ◽

Management Practices ◽

Outcome Measurement ◽

Acquired Brain Injury ◽

Case Managers ◽

Management Service ◽

Family Needs ◽

Wide Range

Aim: To investigate the characteristics of Australian organisations providing case management to individuals who have acquired brain injury, and to determine the methods of case management service delivery including professional development and evaluation of outcomes.Method: An anonymous 23-item web-based survey was used. Respondents were case managers who deliver services to adults and/or children with brain injuries. A snowball sampling method was used to recruit respondents from around Australia.Findings: Fifty-one case managers completed the survey. Respondents were from a wide range of professions, the largest group being occupational therapy. The majority of respondents were based in metropolitan areas, were employed within the public health system and were based in the community. Respondents reported that the main determinant for clients receiving case management was the severity of the brain injury followed by complex family needs. Variations in practice and a lack of consistency in outcome measurement, goal setting and professional development were noted.Discussion: This study provides an overview of characteristics of case management practices for people with acquired brain injury (ABI). Identifying roles and responsibilities of case managers is the first step to developing future research designs, which determine the effectiveness of case management.

Download Full-text

Train 4 Good - an eight-month mindfulness program live on Internet for long-term mental fatigue and emotional distress after an acquired brain injury

Archives of Psychology ◽

10.31296/aop.v2i5.61 ◽

2018 ◽

Vol 2 (5) ◽

Author(s):

Birgitta Johansson ◽

Helena Bjuhr

Keyword(s):

Brain Injury ◽

Emotional Distress ◽

Short Form ◽

Acquired Brain Injury ◽

Well Being ◽

Mental Fatigue ◽

Good Program ◽

Face To Face ◽

Self Compassion

Long-term psychosocial and emotional difficulties and mental fatigue after stroke and traumatic brain injury (TBI) is common and there is a need for rehabilitation and support. Mindfulness can contribute to well-being and can be delivered in groups and also on Internet. The aim of this feasibility study was to evaluate whether an eight-month mindfulness program, Train 4 Good, could be successfully delivered live on Internet (10 participants) for participants suffering from long-term mental fatigue after a TBI or stroke. A face-to face group was used for comparison (10 participants). The program Train 4 Good, includes cultivation of the four mental states of the Brahma Viharas; metta/loving-kindness, compassion, appreciative joy and equanimity. The Train 4 Good program was designed to enable people suffering from long-term mental fatigue and emotional distress after an acquired brain injury to further explore meditation, enhance well-being and to deepen their meditative practice after having completed a Mindfulness-Based Stress Reduction (MBSR) program. Significant improvement in self-compassion (Self Compassion Scale short form) was achieved after the Train 4 Good program. In conclusion, we suggest that it is possible to deliver the Train 4 Good program live on Internet for people suffering from mental fatigue and emotional distress after an acquired brain injury with a similar alleviation of self-compassion as for a face-to-face group. Mindfulness programs can be a valuable option for rehabilitation after an acquired brain injury when the fatigue and emotional burden can become long-lasting or lifelong. Development of longer mindfulness programs is warranted, since mental health problems only improve slowly and long-term support is requested.

Download Full-text

Contribution of Rehabilitation Counsellors in the Rehabilitation of Persons with Acquired Brain Injury

Australian Journal of Rehabilitation Counselling ◽

10.1017/s1323892200100055 ◽

1995 ◽

Vol 1 (1) ◽

pp. 23-32 ◽

Cited By ~ 2

Author(s):

Ross Crisp

Keyword(s):

Brain Injury ◽

Service Delivery ◽

Case Management ◽

Therapeutic Relationship ◽

Systems Approach ◽

Acquired Brain Injury ◽

Rehabilitation Service ◽

Rehabilitation Process ◽

Counselling Practice ◽

Vocational Evaluation

Recent rehabilitation counselling literature has pointed to major developments in the contribution of rehabilitation counsellors to acquired brain injury (ABI) rehabilitation. Rehabilitation counsellors have widened their skill base in case management, vocational evaluation, and in the therapeutic relationship between counsellor and client. It is evident, however, that better methods of ABI rehabilitation service delivery, including those services provided by rehabilitation counsellors, continue to be sought. Strategies needed to ensure the advancement of rehabilitation counselling practice and research in ABI rehabilitation are discussed, and involve the adoption of a systems approach, a shift away from dominant clinical psychological analyses in favour of psychosocial frameworks, and the co-participation of persons with ABI in the rehabilitation process.

Download Full-text