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Impact on life after intracranial aneurysm rupture: health-related quality of life and epidemiologic outcomes
Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm.
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to describe impact on life up to ten years after intracranial aneurysm rupture in terms of health-related quality of life, changes in everyday life and descriptive epidemiology with the intention to contribute to an increased understanding of the long-term perceived consequences of that impact.

Study I aimed to describe changes and transitions in everyday life during the first two years following an intracranial aneurysm rupture. A consecutive sample of 88 patients was followed-up at three time points. A majority of respondents perceived changes in their everyday life during the first two years following aneurysm rupture. Transitions were revealed within changes in personality, changed social roles and relationships, and changed abilities and behavior.

In Study II epidemiology in relation to gender differences and treatment modalities ten years after aneurysm rupture was investigated. Ten years after the onset, 63.9% of the 468 admitted patients were still alive. The incidence in women was higher than that of men; they were older at onset and were diagnosed with more aneurysms. There were no significant differences in survival times between patients treated with different active aneurysm treatments, or between men and women.

In Study III survivors from study II (n=217) were followed-up with questionnaires and telephone interviews, aiming to describe psychological, physical and cognitive functions ten years after intracranial aneurysm rupture. Compared to reference groups, the aneurysm respondents scored higher levels of anxiety and depression. Respondents with ruptured aneurysms in the posterior circulation of the brain scored significantly more symptoms of anxiety and depression. A small proportion, 2.8%, scored for severe physical disability and 21.7% scored below the cut-off value, indicating cognitive impairments.

Study IV used the same sample as study III (n=217), and a general population sample (n=434) from the Stockholm Public Health Survey, matched by age and sex. The aim was to measure health-related quality of life (HRQoL), and to explore factors affecting HRQoL, ten years after intracranial aneurysm rupture. Compared to general population, the aneurysm sample reported significantly more problems with mobility, self-care, usual activities and anxiety/depression and had significantly lower overall HRQoL values. HRQoL in the aneurysm sample was most affected in respondents with worse neurological outcome, respondents with comorbidities, and respondents with low perceived recovery.

In conclusion, intracranial aneurysm ruptures impacts upon life in several ways for an extensive period of time after the onset. The results indicate a need for follow-up and support, and to identify subgroups of aneurysm patients who might benefit from support: patients with ruptured aneurysms in the posterior circulation of the brain; patients with worse neurological outcome at hospital discharge; patients with comorbidities; and patients with low perceived recovery. Ten years after the onset of aneurysm rupture the majority of patients were still alive. Differences between men and women were apparent in incidence and clinical presentation at the onset of aneurysm rupture, not in survival times. Survival time was equal between patients within active treatment modalities.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet , 2012. , 70 p.
Keyword [en]
intracranial aneurysm rupture, quality of life
National Category
Nursing
Identifiers
URN: urn:nbn:se:rkh:diva-701ISBN: 978-91-7457-927-7 (print)OAI: oai:DiVA.org:rkh-701DiVA: diva2:638639
Public defence
2012-12-14, Kugelbergsalen, Karolinska Universitetssjukhuset, Solna, 14:00
Opponent
Supervisors
Available from: 2014-09-17 Created: 2013-08-01 Last updated: 2014-09-17Bibliographically approved
List of papers
1. Transitional experiences in patients following intracranial aneurysm rupture
Open this publication in new window or tab >>Transitional experiences in patients following intracranial aneurysm rupture
2014 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 9-10, 1263-1273 p.Article in journal (Refereed) Published
Abstract [en]

Aims and objectives

To describe changes and transitions in everyday life in the first two years following an intracranial aneurysm rupture.

Background

An intracranial aneurysm rupture causes a haemorrhagic stroke, and the physical and mental consequences of this condition are numerous and complex. In Sweden, some, but not all, patients receive rehabilitation for this condition. Patients with this type of stroke are not included in the national stroke registry; thus, information on the recovery period for these particular patients is lacking.

Design

A longitudinal mixed methods study design was used.

Methods

The sample was consecutive and consisted of 88 patients (84·6% of 104 eligible), acutely admitted to a neurosurgical clinic in Stockholm for intracranial aneurysm rupture. Data were collected through a postal study-specific questionnaire at 6 months, 1 year and 2 years postaneurysm rupture. Intramethod mixing was used in the data collection, and quantitative and qualitative data were analysed parallel with statistical and qualitative content analysis.

Results

A majority of participants perceived changes in their everyday lives during the first two years following aneurysm rupture, and the changes were ongoing with little differences reported between 6 months and 2 years after the onset. Internal changes, or transitions, were revealed within changes in personality, changed social roles and relationships and changed abilities and behaviour.

Conclusions

Recovering from an intracranial aneurysm rupture involves a period of intense changes and transitions, a vulnerable period for many people that may be made easier to manage by the intervention of nurses.

Relevance to clinical practice

Patients experiencing transitions in the recovery period after intracranial aneurysm rupture may benefit from nursing interventions that support them through the transitional process. Nurse-led follow-up care by a specialist nurse from the neurosurgical clinic may be a possible way to provide support.

Place, publisher, year, edition, pages
John Wiley & Sons, 2014
Keyword
everyday life, multifaceted approach to change, neurosurgery, nursing, patients' experience, stroke
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-711 (URN)10.1111/jocn.12317 (DOI)23957605 (PubMedID)
Note

Som manuskript i avhandling. As manuscript in dissertation.

Available from: 2013-08-26 Created: 2013-08-26 Last updated: 2014-11-07Bibliographically approved
2. Descriptive Epidemiology in Relation to Gender Differences and Treatment Modalities 10 Years After Intracranial Aneurysm Rupture in the Stockholm Cohort 1996–1999
Open this publication in new window or tab >>Descriptive Epidemiology in Relation to Gender Differences and Treatment Modalities 10 Years After Intracranial Aneurysm Rupture in the Stockholm Cohort 1996–1999
2013 (English)In: World Neurosurgery, ISSN 1878-8750, E-ISSN 1878-8769, Vol. 80, no 3-4, 328-334 p.Article in journal (Refereed) Published
Abstract [en]

Objective

To describe epidemiology in relation to gender differences and treatment modalities 10 years after intracranial aneurysm rupture in the Stockholm cohort 1996–1999.

Methods

A total of 468 consecutive patients with aneurysmal subarachnoid hemorrhage were followed-up in a retrospective cohort design 10 years after rupture. Information on medical history, clinical variables, and treatments were obtained from patient records. Causes of death were obtained from patient records and The Swedish Cause of Death Register. Incidence of ruptured aneurysms per 100,000 people were calculated from male, female, and overall population data per year from 1996–1999.

Results

Ten years after aneurysm rupture 63.9% (n = 296) of patients were still alive. The overall 28-day case fatality was 19.4%; most often deaths were due to the initial hemorrhage. There were no significant differences in survival time between patients treated with clipping (8.4 years, 95% confidence interval 8.1–8.8), compared with endovascularly treated patients (8.2 years, 95% confidence interval 7.4–9.1) (log rank P = 0.550). The female incidence was higher than that of men, and women were significantly older at the onset of aneurysm rupture (55.7 vs. 52.8 years, P = 0.027).

Conclusions

Ten years after rupture, most treated patients were still alive. The mortality was highest in the first month after rupture, due to the initial hemorrhage. Gender differences were apparent in incidence, but 10 years after the rupture mortality rates and survival times were equal between men and women. Survival time was equal between patients within active treatment modalities.

Place, publisher, year, edition, pages
Elsevier, 2013
Keyword
epidemiology, gender, intracranial aneurysm, subarachnoid hemorrhage
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-500 (URN)10.1016/j.wneu.2012.06.041 (DOI)22898030 (PubMedID)
Note

Som manuskript i avhandling. As manuscript in dissertation

Available from: 2013-02-19 Created: 2013-02-19 Last updated: 2014-11-07Bibliographically approved
3. Cognitive, Physical, and Psychological Status After Intracranial Aneurysm Rupture: A Cross-Sectional Study of a Stockholm Case Series 1996 to 1999
Open this publication in new window or tab >>Cognitive, Physical, and Psychological Status After Intracranial Aneurysm Rupture: A Cross-Sectional Study of a Stockholm Case Series 1996 to 1999
2013 (English)In: World Neurosurgery, ISSN 1878-8750, E-ISSN 1878-8769, Vol. 79, no 1, 130-135 p.Article in journal (Refereed) Published
Abstract [en]

Objective

We sought to (1) describe psychological, physical, and cognitive functions in patients 10 years after intracranial aneurysm rupture and (2) identify any differences in outcome variables between age groups, gender or aneurysm locations.

Methods

A consecutive sample of patients (n = 217) treated for intracranial aneurysm rupture at a neurosurgical clinic in Stockholm, Sweden, were followed-up in a cross-sectional design 10.1 years after the onset with questionnaires and telephone interviews. The outcome measures were psychological functions in terms of symptoms of anxiety or depression and physical and cognitive functions.

Results

Compared with the reference groups, the aneurysm patients scored greater levels of anxiety and depression than normal values. Patients with aneurysm rupture in the posterior circulation scored significantly more problems with anxiety and depression. Only 2.8% of the patients scored for severe physical disability. On a group level, cognition was lower than normal population levels; 21.7% of respondents scored below the cut-off value, indicating cognitive impairments.

Conclusions

Ten years after aneurysm rupture the majority of patients seem to be well-functioning physically, whereas the psychological and cognitive functions are affected. A screening of the mental health of these patients in connection to radiological follow-up might be helpful to identify which patients need further referral to psychiatric treatment for anxiety and depression disorders.

Place, publisher, year, edition, pages
Elsevier, 2013
Keyword
activities of daily living, anxiety, cognition, depression, intracranial aneurysm, long-term survivors, subarachnoid hemorrhage
National Category
Nursing
Identifiers
urn:nbn:se:rkh:diva-499 (URN)10.1016/j.wneu.2012.03.032 (DOI)22484070 (PubMedID)
Note

Som manuskript i avhandling. As manuscript in dissertation

Available from: 2013-02-19 Created: 2013-02-19 Last updated: 2014-11-07Bibliographically approved
4. Health-Related Quality of Life 10 Years After Intracranial Aneurysm Rupture: A Retrospective Cohort Study Using EQ-5D
Open this publication in new window or tab >>Health-Related Quality of Life 10 Years After Intracranial Aneurysm Rupture: A Retrospective Cohort Study Using EQ-5D
Show others...
2013 (English)In: Neurosurgery, ISSN 0148-396X, E-ISSN 1524-4040, Vol. 72, no 3, 397-405 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Experiencing an aneurysmal subarachnoid hemorrhage (SAH) could affect health-related quality of life (HRQoL) several years after the onset. Long-term studies are scarce, and there is a lack of knowledge of whether HRQoL is affected > 5 years after the onset and, if so, in what dimensions. In the general population, HRQoL decreases with age and with the occurrence of a disease and differs between sexes. Factors that may influence HRQoL after aneurysmal SAH include neurological outcome, perceived recovery, aneurysm treatment, and family support.

OBJECTIVE: To measure HRQoL and to explore factors affecting HRQoL 10 years after aneurysmal SAH.

METHODS: A consecutive sample of all patients admitted for intracranial aneurysm rupture at a neurosurgical clinic in Stockholm (n = 217, 79.5% of eligible) were followed up from 2007 to 2008, approximately 10 years after aneurysm rupture. HRQoL was measured with EQ-5D, and the results were compared with a general population sample from the Stockholm Public Health Survey 2006 matched by age and sex.

RESULTS: Compared with the general population, the aneurysm sample reported significantly more problems in 4 of 5 EQ-5D dimensions—mobility, self-care, usual activities, and anxiety/depression—and had significantly lower EQ-5Dindex and EQ visual analog scale values. Within the aneurysm sample, HRQoL was most affected in respondents with worse Glasgow Outcome Scale values at hospital discharge, respondents with comorbidities, and respondents with low perceived recovery.

CONCLUSION: Aneurysmal SAH affects HRQoL to a large extent, even 10 years after the onset, indicating a need for long-term follow-up and support after the onset

Place, publisher, year, edition, pages
Lippincott Williams & Wilkins, 2013
Keyword
Glasgow outcome scale, health-related quality of life, subarachnoid hemorrhage, visual analog scale
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:rkh:diva-501 (URN)10.1227/NEU.0b013e3182804686 (DOI)23208056 (PubMedID)
Note

Som manuskript i avhandling. As manuscript in dissertation

Available from: 2013-02-20 Created: 2013-02-20 Last updated: 2014-12-16Bibliographically approved

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