University of Groningen
Outcomes after Spinal Cord Injury
Osterthun, Rutger
IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document version below.
Document Version
Publisher's PDF, also known as Version of record
Publication date: 2018
Link to publication in University of Groningen/UMCG research database
Citation for published version (APA):
Osterthun, R. (2018). Outcomes after Spinal Cord Injury. Rijksuniversiteit Groningen.
Copyright
Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).
Take-down policy
If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.
Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum.
1
SPINal CORd INjuRy
A spinal cord injury (SCI) is an injury to the spinal cord, resulting in for example muscle weakness, loss of sensation and autonomic dysfunction below the level of injury.1 The
aetiology of SCI can be either traumatic or non-traumatic. Traumatic causes include falls, motor vehicle accidents, sports and violence. Non-traumatic causes include degenerative diseases, vascular diseases, inflammation and tumors.
The degree of loss of function after SCI is determined by the level and completeness of the injury, such as defined by Kirshblum et al.1 The level of injury refers to the most
caudal segment of the spinal cord with normal sensory and antigravity motor function on both sides of the body, provided that there is normal motor and sensory function rostrally. The levels of injury can be roughly divided in tetraplegia and paraplegia. Tetraplegia can be defined as impairment or loss of motor and/or sensory function in the cervical segments of the spinal cord. A tetraplegia may result in impairment of function in the arms as well as in the legs, trunk and pelvic organs. Paraplegia refers to impairment or loss of motor and/or sensory function in the thoracic, lumbar or sacral segments of the spinal cord. Arm functioning is spared with paraplegia. Depending on the level of injury, the trunk, pelvic organs and legs may be involved. The term paraplegia is also used in referring to cauda equina and conus medullaris injuries.
An SCI is considered as incomplete when there is preservation of sensory and/or motor function below the neurological level that includes the lowest sacral segments, and as complete when there is an absence of sensory and motor function in the lowest sacral segments.1
EPIdEmIOlOgy
The incidence of traumatic SCI in the Netherlands has been estimated on 11.7 per million per annum.2 This is on the low end of incidence rates worldwide, which range
from 8 to 53 per million.3,4 There are no incidence figures of non-traumatic SCI in
the Netherlands. Worldwide, incidence rates ranging from 11.4 to 68 per million per annum have been reported, but global incidence rates cannot be estimated because of for example methodological differences and incomplete case ascertainment.4
There are no prevalence rates of SCI in the Netherlands. Worldwide prevalence rates range from 280 to 1298 per million for traumatic SCI.4 Prevalence data for non-traumatic
SCI are only available for Australia and Canada, which are respectively 367 and 1227 per million.4
ImPaCT Of SCI
SCI can have a great impact on survival, health, performing activities, social participa-tion and quality of life. These outcomes will be discussed in more detail below. Two classifications, developed by the World Health Organization (WHO), can be used to describe these outcomes. The International Classification of Diseases (ICD) is designed as a health care classification system, providing a system of diagnostic codes for classifying diseases and mortality. The ICD is the standard diagnostic tool for health management, epidemiology and clinical purposes.5 ICD codes for SCI distinguish for
example in cause of injury (traumatic or non-traumatic) and level of injury.
The International Classification of Functioning, Disability and Health (ICF) provides a scientific, operational basis for describing and studying health and health related states, outcomes and determinants.6 It describes the effect of a health condition on human
functioning and provides a standard language and framework for the description of health and health-related states. According to the ICF model, three levels of human functioning can be described, namely functioning at the level of body or body part (body functions and structures), the whole person (activities), and the whole person in a social context (participation). Disability therefore involves dysfunctioning at one or more of these levels: impairments, activity limitations and restrictions in participation.6
These levels are influenced by environmental factors, such as social support, financial and economic resources, and by personal factors, such as gender, age and psychological characteristics. All the aspects of the ICF model interact with each other (figure 1). The ICF model is recommended to describe functioning in SCI.7
Health Condition (disorder or disease)
Environmental
Factors Personal Factors Body functions
& structure Activities Participation
SCI CaRE IN ThE NEThERlaNdS
Three phases of care may be distinguished after a new SCI in the Netherlands, the hospital phase, the rehabilitation phase, and the post rehabilitation phase.
After a new SCI, persons are usually admitted to a hospital.8 The initial care focuses
on prioritizing and treating life-threatening injuries to maximize survival, treating potentially disabling injuries so as to minimize impairment, and minimizing pain and psychological suffering.9-11 In case of an unstable spine or ongoing compression of the
spinal cord, conservative interventions, surgical interventions or both may be necessary. After their initial hospitalization, persons with SCI are generally admitted to a rehabilitation centre with a SCI specialized unit or to a nursing home for their inpatient rehabilitation. The rehabilitation of persons with SCI focuses on regaining activities and social participation. Preventing and learning to handle secondary health conditions (SHCs), such as a disturbed bladder and bowel function, further form an important part of the rehabilitation. The rehabilitation team consists of physicians, nurses, physiotherapists, occupational therapists, social workers, psychologists and sports instructors. After inpatient rehabilitation, persons may be discharged to their home, a nursing home, or a guided living facility, depending on their functional abilities. Mostly, the inpatient rehabilitation is followed by a period of outpatient rehabilitation. Persons who are functionally independent at the end of their hospital stay may also be directly discharged home from the hospital and depending on their needs they may start rehabilitation in an outpatient setting.
In the post rehabilitation phase, persons with SCI are seen on a regular basis for a check-up by the rehabilitation physician. If necessary, other members of the rehabilitation team can be involved or new outpatient rehabilitation may be occasionally started.
OuTCOmES afTER SCI
Since SCI may have a great impact on survival, health, performing activities, social participation and quality of life, it is relevant to have insight into outcomes and their determinants on these domains. These insights may help to improve outcomes. Out-comes may change over time as a result of for example changing epidemiological characteristics, developments in health care and societal trends. Six main outcomes after SCI will be described in the next paragraphs.
Survival
Survival rates have considerably improved since the 1950s.12 Persons with SCI may
population.12,13 Therefore, it is relevant to keep gaining insight into developments of
survival. Life expectancy of persons with a SCI is shown to be dependent of for example the age at injury and the level of injury.12 The leading cause of death is found to be
related to the respiratory system.12
In the hospital phase, survival may be considered as one of the main outcomes. An in-hospital mortality rate of 14% in traumatic SCI is found in the Netherlands.14 Little is
known on in-hospital survival rates of persons with non-traumatic SCI, which may also depend on the underlying condition.
Neurological status
The neurological status, i.e. level and completeness of the injury, of persons with SCI can be described according to the International Standards for Neurological Clas-sification of SCI (ISNCSCI).1 Recovery of sensory or motor function may occur at the
neurological level or at the completeness of the injury. In complete cervical SCI there is a large chance of recovery (97%) of motor function on one level below the level of injury level if there is any motor function at that level at one month after the injury. Without any motor function one level below the level of injury at one month after the injury, the change of recovery of motor function on that level is only 27%.15 Fawcett et
al. found that the chance of recovery to ASIA Impairment Scale (AIS) D one year after the onset of SCI was respectively 2, 35, 65 and 95% for persons with AIS A, B, C and D respectively, after 3 till 28 days.16
health
Many organ systems may be affected after SCI as a result of autonomic and somatic nervous system dysfunction. As a result, persons with SCI are likely to develop SHCs. SHCs are defined as physical or psychological health conditions that are influenced di-rectly or indidi-rectly by the presence of a disability or underlying physical impairment.17
Examples of SHCs are musculoskeletal pain, neuropathic pain, pressure sores, urinary tract dysfunction and cardiovascular disease.18,19 Some SHCs may develop soon after
the SCI and others may develop with aging. Prevention and treatment and handling of SHCs are important issues during the persons’ life. SHCs may lead to serious complica-tions and eventually to death.
activities
Regaining activities leading to functional independence is one of the main goals of re-habilitation. The ability to perform activities, such as self-care and mobility, is strongly related to the injury characteristics.20
Traditionally, functional independence was measured with the Functional Independence Measure (FIM). The use of the more recently developed Spinal Cord
Independence Measure III (SCIM III) is increasing. The SCIM III was developed for persons with SCI and is shown to be more responsive than the FIM to functional changes in sphincter management and mobility indoors and outdoors.21,22 It is recommended as
the primary outcome measure to assess functional recovery in SCI.23
Participation
The focus during rehabilitation gradually changes from regaining activities to improv-ing participation levels, which is an important outcome of the rehabilitation.24,25
Participation may be defined as the involvement of an individual in a life situation and represents the social perspective on functioning.6 Participation levels among persons
with SCI are in general lower than among non-disabled persons.26-31 Participation
is a complex concept and several determinants of participation are described, such as severity of the injury, age (both at injury as at the time of the study), educational level, functional independence, wheelchair skills, self-efficacy, purpose in life and environmental factors.26,28-30,32,33 Hospitalization due to SHCs may also lead to lower
participation levels.34
Quality of life
Obviously, quality of life is an important issue throughout the life of a person with SCI. Although they in general experience a lower quality of life than the general population, most persons with SCI are able to adapt to the consequences of the SCI.35 It has been
found that about 70% of persons with SCI experience a good mental health.35
Psycho-social factors seem to be more related to experienced quality of life than injury related factors.36 Further, participation and environmental factors are found to be determinants
of quality of life.33,37
EPIdEmIOlOgICal TRENdS IN SCI
Three epidemiological trends can be observed within the field of SCI. The first two trends concern respectively new non-traumatic and new traumatic injuries. The third trend concerns the current (and future) SCI population.
Concerning the first trend, the incidence of non-traumatic SCI is expected to further increase with ongoing aging of the general population, as some non-traumatic causes of the injury are age related, such as vascular diseases and spinal degeneration.38 There
has been a growing research interest in non-traumatic SCI in the past decades. However, there are several challenges for research regarding persons with non-traumatic SCI.39 In
general, it is more difficult to gain insight in the non-traumatic SCI population, than in the traumatic SCI population. Persons with non-traumatic SCI may be admitted to several
hospital wards, depending on the underlying diagnosis. They may be registered under another diagnosis and may not be labeled as non-traumatic SCI. This may also lead to less referral to SCI specialized rehabilitation centres. Another complicating aspect on research and care of non-traumatic SCI is that the prognosis of some subgroups may be unclear or unfavorable. The most distinct subgroup is non-traumatic SCI due to a malignant tumor. Referral patterns of these cases seem to have been changing now and then in the Netherlands and it is expected that a part of this subgroup is not referred to rehabilitation centres due to a unfavorable prognosis.40
In general, the awareness of the importance of rehabilitation of persons with non-traumatic SCI has increased and it seems that more persons with a non-non-traumatic SCI are admitted to SCI specialized rehabilitation centres. Studies on functional independence after SCI have however been mainly focusing on traumatic SCI.41-43
Since an increasing number of persons with non-traumatic SCI seems to be admitted to inpatient rehabilitation, it is relevant to know whether functional outcomes on activity level are comparable with that of persons with traumatic SCI.
Concerning the second trend, the mean age of persons with a new traumatic SCI has considerably increased in developed countries in the past decades, probably largely the result of aging of the general population.2 In these countries, traumatic SCI is now
most commonly seen after (same-level) falls. This has resulted in a higher incidence of persons with an incomplete tetraplegia.2 This change in epidemiological characteristics
of persons with a new traumatic SCI may also affect mortality figures.44 Since traumatic
SCI nowadays seems to be a disease that mainly affects elderly, a persons’ wish to end a life may become more important in survival figures. Little is known on end-of-life decisions (ELDs) after SCI,45-47 especially not on ELDs in the hospital phase after new
SCI.
Concerning the third trend, more people are nowadays aging with their SCI. Survival rates have considerably improved since the 1950s as a result of improvements in health care.12 Persons with SCI however still die earlier than non-disabled persons depending
on for example age at injury and injury characteristics.4,12,48 Internationally, persons
with SCI are found to be 2 to 5 times more likely to die prematurely than persons without SCI.4 Recent research from the U.S. shows that the improvement of survival
of persons with traumatic SCI in the last few decades seems to be mainly based on improvements in acute care.48,49 However, the risk of death is still the highest during
the first years after injury.49-52 The predominant long-term causes of death have changed
from urological complications to cardiovascular and pulmonary diseases.12 Most
studies on life expectancy only included persons with traumatic SCI.12 Further, there is
no information available on mortality and causes of death in the rehabilitation and post rehabilitation phase in the Netherlands.
Since there are nowadays more people with long-standing SCI, issues on age- or time since injury-related outcomes have become more important. Although it is often assumed that functional independence decreases with aging, longitudinal studies on this subject showed inconsistent results53-55 and cross-sectional studies did not find
clues for a decline.53,56-59 Long-term functional independence has not been described
in the Netherlands.
Maintaining participation levels may be another important issue for persons aging with their SCI.60 Although there are clues for the importance of a good physical capacity
in relation to participation, little research is performed on the relation between physical capacity and participation.61,62 The relation between physical capacity and participation
is especially interesting since the physical capacity is a modifiable factor.
aIm Of ThE ThESIS
The general aim of this thesis was to gain insight into outcomes and their determinants at the level of survival and functioning, in the hospital, rehabilitation and post rehabili-tation phase after SCI.
Out of several relevant actual topics on outcomes, the following research questions were studied.
1. To which extent do ELDs occur in the hospital after new traumatic SCI in the Neth-erlands? What are the types of ELDs and what are the characteristics of deceased patients? (Chapter 2)
2. What are personal and injury characteristics, length of stay (LOS) and functional outcomes of patients with traumatic and non-traumatic SCI admitted to rehabilita-tion centres in the Netherlands and Flanders? (Chapter 3)
3. What is the mortality ratio and what are the causes and determinants of death from the start of first inpatient rehabilitation until five years after discharge in the Nether-lands? (Chapter 4)
4. What is the association between time since injury and functional independence, measured with the SCIM III, in persons with long-standing SCI? What are the as-sociations between functional independence and level of injury, comorbidities, mental health, waist circumference and SHCs? (Chapter 5)
5. What is the relationship between physical capacity and participation in persons with long-standing SCI controlling for demographics, injury characteristics, SHCs, mental health and functional independence? (Chapter 6)
CONTExT Of RESEaRCh aNd OuTlINE Of ThESIS
This thesis describes outcomes and their determinants after SCI at the level of survival and functioning. The results are described in order of the different phases of care after SCI, namely the hospital, rehabilitation and post rehabilitation phase. Table 1 gives an overview of the outcomes in different phases after SCI and outcomes described in this thesis.
To answer research question 1, discharge letters of persons included in a hospital-based study on the incidence of TSCI in the Netherlands in 20102 were analyzed in
more detail. The results are described in chapter 2.
For research question 2, we have collected data with a form that was developed for the Minimal Dataset Project by the Dutch Flemish Spinal Cord Society (DuFSCoS). Data of persons admitted to Dutch and Flemish rehabilitation centres between 2002 and 2007 were analyzed. The results are described in chapter 3.
For research question 3, data was partly derived from the Dutch prospective multicentre cohort study ‘Restoration of (wheelchair) mobility in spinal cord injury rehabilitation’. This project was part of the Dutch research program ‘Physical strain, work capacity and mechanisms of restoration of mobility in the rehabilitation of persons with a spinal cord injury’.63 Additional information on survival status and, if applicable, cause of death was
requested retrospectively from the rehabilitation physician or general practitioner with a form developed for this project. The results of this study are described in chapter 4.
Table 1. Outcomes in different phases after SCI and focus in this thesis
Hospital phase Rehabilitation phase Post rehabilitation phase
Survival ✓* ✓* ✓* Neurological status ✓ ✓* ✓ Health ✓ ✓ ✓ Activities ✓* ✓* Participation ✓ ✓* Quality of life ✓ ✓ ✓
The data for research questions 4 and 5 was derived from the Active LifestyLe Rehabilitation Interventions in aging Spinal Cord injury (ALLRISC) study, a cross-sectional study in 8 rehabilitation centers in the Netherlands. The main aim of the ALLRISC was to obtain a better understanding of the importance and requirements of rehabilitation aftercare in aging persons with chronic SCI.64,65 The results of the studies
on question 4 and 5 are described in respectively chapter 5 and chapter 6.
Figure 2 gives an overview on the fi ve studies (chapter 2 to chapter 6) that were performed to answer the research questions in different phases after SCI.
Finally, chapter 7 contains the general discussion of this thesis, including an overview of the main results, implications and directions for future research.
Survival
Functioning
Hospital Rehabilitation Post rehabilitation End-of-life
decisions (Chapter 2)
Survival and causes of death (Chapter 4) Characteristics, length of stay and functional outcome
(Chapter 3)
Functional independence (Chapter 5)
Relation physical capacity-participation (Chapter 6)
REfERENCES
1. Kirshblum SC, Burns SP, Biering-Sorensen F, Donovan W, Graves DE, Jha A, et al. International standards for neurological classification of spinal cord injury (revised 2011). J Spinal Cord Med. 2011 Nov;34(6):535-46.
2. Nijendijk JH, Post MW, van Asbeck FW. Epidemiology of traumatic spinal cord injuries in The Netherlands in 2010. Spinal Cord. 2014 Apr;52(4):258-63.
3. Singh A, Tetreault L, Kalsi-Ryan S, Nouri A, Fehlings MG. Global prevalence and incidence of traumatic spinal cord injury. Clin Epidemiol. 2014;6:309-31.
4. Bickenbach. International Perspectives on Spinal Cord Injury. Geneva, Switzerland: WHO; 2013.
5. World Health Organization. International Statistical Classification of Diseases and Related Health Problems. 10th ed. Geneva, Switzerland: WHO; 1994.
6. World Health Organization International Classification of Functioning, Disability and Health. Geneva, Switzerland: WHO; 2001.
7. Kirchberger I, Biering-Sorensen F, Charlifue S, Baumberger M, Campbell R, Kovindha A, et al. Identification of the most common problems in functioning of individuals with spinal cord injury using the International Classification of Functioning, Disability and Health. Spinal Cord. 2010 Mar;48(3):221-9.
8. Post MW, Nooijen CF, Postma K, Dekkers J, Penninx F, van den Berg-Emons RJ, et al. People with Spinal Cord Injury in the Netherlands. Am J Phys Med Rehabil. 2017 Feb;96(2 Suppl 1):S93-S5. 9. Stein DM, Knight WAt. Emergency Neurological Life Support: Traumatic Spine Injury. Neurocrit
Care. 2017 Sep;27(Suppl 1):170-80.
10. Stein DM, Pineda JA, Roddy V, Knight WAt. Emergency Neurological Life Support: Traumatic Spine Injury. Neurocrit Care. 2015 Dec;23 Suppl 2:S155-64.
11. Stein DM, Roddy V, Marx J, Smith WS, Weingart SD. Emergency neurological life support: traumatic spine injury. Neurocrit Care. 2012 Sep;17 Suppl 1:S102-11.
12. van den Berg ME, Castellote JM, de Pedro-Cuesta J, Mahillo-Fernandez I. Survival after spinal cord injury: a systematic review. J Neurotrauma. 2010 Aug;27(8):1517-28.
13. National Spinal Cord Injury Statistical Center, Facts and Figures at a Glance. Birmingham, AL: University of Alabama at Birmingham, 2017.
14. van Asbeck FW, Post MW, Pangalila RF. An epidemiological description of spinal cord injuries in The Netherlands in 1994. Spinal Cord. 2000 Jul;38(7):420-4.
15. Waters RL, Yakura JS, Adkins RH, Sie I. Recovery following complete paraplegia. Arch Phys Med Rehabil. 1992 Sep;73(9):784-9.
16. Fawcett JW, Curt A, Steeves JD, Coleman WP, Tuszynski MH, Lammertse D, et al. Guidelines for the conduct of clinical trials for spinal cord injury as developed by the ICCP panel: spontaneous recovery after spinal cord injury and statistical power needed for therapeutic clinical trials. Spinal Cord. 2007 Mar;45(3):190-205.
17. Jensen MP, Molton IR, Groah SL, Campbell ML, Charlifue S, Chiodo A, et al. Secondary health conditions in individuals aging with SCI: terminology, concepts and analytic approaches. Spinal Cord. 2012 May;50(5):373-8.
18. Adriaansen JJ, Post MW, de Groot S, van Asbeck FW, Stolwijk-Swuste JM, Tepper M, et al. Secondary health conditions in persons with spinal cord injury: a longitudinal study from one to five years post-discharge. J Rehabil Med. 2013 Nov;45(10):1016-22.
19. Adriaansen JJ, Ruijs LE, van Koppenhagen CF, van Asbeck FW, Snoek GJ, van Kuppevelt D, et al. Secondary health conditions and quality of life in persons living with spinal cord injury for at least ten years. J Rehabil Med. 2016 Nov 11;48(10):853-60.
20. Facchinello Y, Beausejour M, Richard-Denis A, Thompson C, Mac-Thiong JM. The use of regression tree analysis for predicting the functional outcome following traumatic spinal cord injury. J Neurotrauma. 2017 Oct 25.
21. Itzkovich M, Gelernter I, Biering-Sorensen F, Weeks C, Laramee MT, Craven BC, et al. The Spinal Cord Independence Measure (SCIM) version III: reliability and validity in a multi-center international study. Disabil Rehabil. 2007 Dec 30;29(24):1926-33.
22. Catz A, Itzkovich M, Agranov E, Ring H, Tamir A. SCIM--spinal cord independence measure: a new disability scale for patients with spinal cord lesions. Spinal Cord. 1997 Dec;35(12):850-6. 23. Anderson K, Aito S, Atkins M, Biering-Sorensen F, Charlifue S, Curt A, et al. Functional recovery
measures for spinal cord injury: an evidence-based review for clinical practice and research. J Spinal Cord Med. 2008;31(2):133-44.
24. Wade DT, de Jong BA. Recent advances in rehabilitation. BMJ. 2000 May 20;320(7246):1385-8. 25. Post MW, van der Zee CH, Hennink J, Schafrat CG, Visser-Meily JM, van Berlekom SB. Validity of
the utrecht scale for evaluation of rehabilitation-participation. Disabil Rehabil. 2012;34(6):478-85.
26. Noreau L, Fougeyrollas P, Post M, Asano M. Participation after spinal cord injury: the evolution of conceptualization and measurement. J Neurol Phys Ther. 2005 Sep;29(3):147-56.
27. Carpenter C, Forwell SJ, Jongbloed LE, Backman CL. Community participation after spinal cord injury. Arch Phys Med Rehabil. 2007 Apr;88(4):427-33.
28. Backus D, Gassaway J, Smout RJ, Hsieh CH, Heinemann AW, DeJong G, et al. Relation between inpatient and postdischarge services and outcomes 1 year postinjury in people with traumatic spinal cord injury. Arch Phys Med Rehabil. 2013 Apr;94(4 Suppl):S165-74.
29. Oyster ML, Karmarkar AM, Patrick M, Read MS, Nicolini L, Boninger ML. Investigation of factors associated with manual wheelchair mobility in persons with spinal cord injury. Arch Phys Med Rehabil. 2011 Mar;92(3):484-90.
30. Hosseini SM, Oyster ML, Kirby RL, Harrington AL, Boninger ML. Manual wheelchair skills capacity predicts quality of life and community integration in persons with spinal cord injury. Arch Phys Med Rehabil. 2012 Dec;93(12):2237-43.
31. Barclay L, McDonald R, Lentin P. Social and community participation following spinal cord injury: a critical review. Int J Rehabil Res. 2015 Mar;38(1):1-19.
32. Peter C, Muller R, Post MW, van Leeuwen CM, Werner CS, Geyh S, et al. Psychological resources, appraisals, and coping and their relationship to participation in spinal cord injury: a path analysis. Arch Phys Med Rehabil. 2014 Sep;95(9):1662-71.
33. Whiteneck G, Meade MA, Dijkers M, Tate DG, Bushnik T, Forchheimer MB. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Arch Phys Med Rehabil. 2004 Nov;85(11):1793-803.
34. Savic G, Short DJ, Weitzenkamp D, Charlifue S, Gardner BP. Hospital readmissions in people with chronic spinal cord injury. Spinal Cord. 2000 Jun;38(6):371-7.
35. Post MW, van Leeuwen CM. Psychosocial issues in spinal cord injury: a review. Spinal Cord. 2012 May;50(5):382-9.
36. van Leeuwen CM, Kraaijeveld S, Lindeman E, Post MW. Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord. 2012 Mar;50(3):174-87.
37. Dijkers MP. Correlates of life satisfaction among persons with spinal cord injury. Arch Phys Med Rehabil. 1999 Aug;80(8):867-76.
38. New PW, Rawicki HB, Bailey MJ. Nontraumatic spinal cord injury: demographic characteristics and complications. Arch Phys Med Rehabil. 2002 Jul;83(7):996-1001.
39. New PW, Guilcher SJT, Jaglal SB, Biering-Sorensen F, Noonan VK, Ho C. Trends, Challenges, and Opportunities Regarding Research in Non-traumatic Spinal Cord Dysfunction. Top Spinal Cord Inj Rehabil. 2017 Fall;23(4):313-23.
40. Hacking HG, Van As HH, Lankhorst GJ. Factors related to the outcome of inpatient rehabilitation in patients with neoplastic epidural spinal cord compression. Paraplegia. 1993 Jun;31(6):367-74.
41. Ditunno Jr JF CM, Formal C, Whiteneck GG. In: Stover SS, DeLisa JA, Whiteneck GG (eds). Functional outcomes. Spinal Cord Injury: Clinical Outcomes from the Model Systems Aspen: Gaithersburg, MD. 1995:170–84.
42. Eastwood EA, Hagglund KJ, Ragnarsson KT, Gordon WA, Marino RJ. Medical rehabilitation length of stay and outcomes for persons with traumatic spinal cord injury--1990-1997. Arch Phys Med Rehabil. 1999 Nov;80(11):1457-63.
43. Tooth L, McKenna K, Geraghty T. Rehabilitation outcomes in traumatic spinal cord injury in Australia: functional status, length of stay and discharge setting. Spinal Cord. 2003 Apr;41(4):220-30.
44. Noe BB, Stapelfeldt CM, Parner ET, Mikkelsen EM. Survival after traumatic spinal cord injury in Denmark: a hospital-based study among patients injured in 1990-2012. Spinal Cord. 2017 Apr;55(4):373-7.
45. Patterson DR, Miller-Perrin C, McCormick TR, Hudson LD. When life support is questioned early in the care of patients with cervical-level quadriplegia. N Engl J Med. 1993 Feb 18;328(7):506-9. 46. Taub AL, Keune JD, Kodner IJ, Schwarze ML. Respecting autonomy in the setting of acute
traumatic quadriplegia. Surgery. 2014 Feb;155(2):355-60.
47. Field HL. A patient with acute traumatic quadriplegia who requested a DNR order. Psychosomatics. 2008 May-Jun;49(3):252-4.
48. Devivo MJ. Epidemiology of traumatic spinal cord injury: trends and future implications. Spinal Cord. 2012 May;50(5):365-72.
49. Strauss DJ, Devivo MJ, Paculdo DR, Shavelle RM. Trends in life expectancy after spinal cord injury. Arch Phys Med Rehabil. 2006 Aug;87(8):1079-85.
50. O’Connor PJ. Survival after spinal cord injury in Australia. Arch Phys Med Rehabil. 2005 Jan;86(1):37-47.
51. Frankel HL, Coll JR, Charlifue SW, Whiteneck GG, Gardner BP, Jamous MA, et al. Long-term survival in spinal cord injury: a fifty year investigation. Spinal Cord. 1998 Apr;36(4):266-74. 52. Chamberlain JD, Meier S, Mader L, von Groote PM, Brinkhof MW. Mortality and longevity after
a spinal cord injury: systematic review and meta-analysis. Neuroepidemiology. 2015;44(3):182-98.
53. Charlifue SW, Weitzenkamp DA, Whiteneck GG. Longitudinal outcomes in spinal cord injury: aging, secondary conditions, and well-being. Arch Phys Med Rehabil. 1999 Nov;80(11):1429-34.
54. Amsters DI, Pershouse KJ, Price GL, Kendall MB. Long duration spinal cord injury: perceptions of functional change over time. Disabil Rehabil. 2005 May 6;27(9):489-97.
55. Pershouse KJ, Barker RN, Kendall MB, Buettner PG, Kuipers P, Schuurs SB, et al. Investigating changes in quality of life and function along the lifespan for people with spinal cord injury. Arch Phys Med Rehabil. 2012 Mar;93(3):413-9.
56. Daverat P, Petit H, Kemoun G, Dartigues JF, Barat M. The long term outcome in 149 patients with spinal cord injury. Paraplegia. 1995 Nov;33(11):665-8.
57. Pentland W, McColl MA, Rosenthal C. The effect of aging and duration of disability on long term health outcomes following spinal cord injury. Paraplegia. 1995 Jul;33(7):367-73.
58. Fuhrer MJ, Rintala DH, Hart KA, Clearman R, Young ME. Relationship of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community. Arch Phys Med Rehabil. 1992 Jun;73(6):552-7.
59. Jorgensen S, Iwarsson S, Lexell J. Secondary Health Conditions, Activity Limitations, and Life Satisfaction in Older Adults With Long-Term Spinal Cord Injury. PM R. 2017 Apr;9(4):356-66. 60. De Ruijter LS dGS, Adriaansen JJ, Smit CA, Post MWM. . Associations between time since onset
of injury and participation in Dutch people with long-term spinal cord injury. Accepted for publication.
61. Manns PJ, Chad KE. Determining the relation between quality of life, handicap, fitness, and physical activity for persons with spinal cord injury. Arch Phys Med Rehabil. 1999 Dec;80(12):1566-71.
62. van Velzen JM, van Leeuwen CM, de Groot S, van der Woude LH, Faber WX, Post MW. Return to work five years after spinal cord injury inpatient rehabilitation: is it related to wheelchair capacity at discharge? J Rehabil Med. 2012 Jan;44(1):73-9.
63. de Groot S, Dallmeijer AJ, Post MW, van Asbeck FW, Nene AV, Angenot EL, et al. Demographics of the Dutch multicenter prospective cohort study ‘Restoration of mobility in spinal cord injury rehabilitation’. Spinal Cord. 2006 Nov;44(11):668-75.
64. van der Woude LH, de Groot S, Postema K, Bussmann JB, Janssen TW, Allrisc, et al. Active LifestyLe Rehabilitation interventions in aging spinal cord injury (ALLRISC): a multicentre research program. Disabil Rehabil. 2013 Jun;35(13):1097-103.
65. Adriaansen JJ, van Asbeck FW, Lindeman E, van der Woude LH, de Groot S, Post MW. Secondary health conditions in persons with a spinal cord injury for at least 10 years: design of a comprehensive long-term cross-sectional study. Disabil Rehabil. 2013 Jun;35(13):1104-10.
