Quality of Life of Patients with Spinal Cord Injury in Italy: - PDF document

Quality of Life of Patients with Spinal Cord Injury in Italy: Preliminary Evaluation Carla ROGNONI * Gabriella FIZZOTTI # , Caterina PISTARINI # , Silvana QUAGLINI * * Department of Electrical, Computer # Spinal Unit and Biomedical Engineering Maugeri IRCCS Foundation University of Pavia, Italy Pavia, Italy UNIVERSITÀ DI P AVIA

Introduction (1) • Actually, the World Health Organization’s International Classification of Functioning, Disability and Health encourages the integration of a comprehensive definition of health when examining patient-related outcomes after injury or disease • One of the most relevant disabilities is caused by Spinal Cord Injury (SCI) • Typical causes of spinal cord damage are trauma (such as a traffic collision, a dive into shallow water, a fall, a sport injury), disease (such as transverse myelitis, multiple sclerosis or polio), or congenital disorders (such as spina bifida) MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Introduction (2) • In most cases a SCI leads to paraplegia or quadriplegia • The loss is usually sensory and motor, which means that both sensation and control are lost MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Introduction (3) • The rehabilitation process following a SCI typically begins in the acute care setting • Physical therapists, occupational therapists, social workers, psychologists and other healthcare professionals typically work as a team under the coordination of a physiatrist to decide on goals with the patient and develop a plan of discharge that is appropriate for the patient’s condition • A primary goal of rehabilitation is to restore, to the greatest possible extent, the physical functioning of an individual after illness or injury MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Aim The aim of this study is twofold: 1) to evaluate the quality of life of patients with SCI, focusing on the associations among functional status and health dimensions 2) to provide a synthetic quality of life index (utility coefficient) to be used in cost-utility analyses involving SCI patients MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

SF-36 questionnaire (1) • To date, a specific validated tool for assessing the quality of life in patients with SCI is not available to our knowledge • A recent meta-analysis identified the SF-36 questionnaire as the most commonly used QoL instrument in the SCI literature • The SF-36 is a 36-item self-administered survey MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

SF-36 questionnaire (2) • The SF-36 measures 8 health domains , in a 0- 100 scale (100=perfect health): ● Physical Functioning - PF ● Social Functioning - SF ● Role limitations due to Physical health - RP ● role limitations due to Mental Health - MH ● General Health - GH ● Emotional Role functioning - RE ● ViTality - VT ● Bodily Pain – BP MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

SF-36 questionnaire (3) • From these scores, two further synthetic Physical Functioning (PF) indexes may be Role Physical (RP) calculated: Physical Bodily Pain (BP) Health ● Physical Synthetic General Health (GH) Index – PSI Vitality (VT) ● Mental Synthetic Index - MSI Social Functioning (SF) Mental Health Role-Emotional (RE) Mental Health (MH) MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Utility coefficient • The utility coefficient, ranging from 0 to 1, corresponds to the quality of life of the patient during a time period, where a value of 1 corresponds to perfect health and a value of 0 corresponds to the worst possible health state that in general is “death” Perfect health Death 1 0 MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Methods (1) • The SF-36 questionnaire has been administered to 130 SCI patients treated at the Spinal Unit of Maugeri IRCCS Foundation (Pavia-Italy) from January 2013 to January 2014 Microsoft Access • The algorithm developed by Brazier and colleagues was applied to convert the SF-36 scores into utility coefficients (U) MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Methods (2) • Respondents’ quality of life was evaluated comparing the distributions of all the scales in different groups of patients (Mann-Whitney test) related to: ● gender (M/F) ● disease phase (acute/chronic) ● paralysis type (quadriplegia/paraplegia) ● patient status (inpatient/outpatient) ● cause of the lesion (traumatic/non traumatic) ● ASIA grade (A-B/C-D)* * American Spinal Injury Association (ASIA) classification grades patients based on their functional impairment from A (greatest impairment) to E (normal condition) MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Results • At the time of the questionnaire administration, 82 patients were hospitalised while the remaining 48 were outpatients, 66 presented a traumatic SCI and 64 non traumatic injuries/illnesses. • Median age was 54 years in men and 60 years in women. Patients in acute phase of disease were 36. Patients distribution among ASIA categories was well balanced (75 patients were ASIA A or B). MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Comparison with Italian population • The SF-36 subscale scores that revealed a stronger impact of SCI were those related to the physical domains MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Comparison between groups (1) disease phase patient status (acute vs. chronic) (inpatient vs. outpatient) * * * * ASIA grade cause of the lesion (traumatic (A-B vs. C-D) vs. non-traumatic) * * * * * * * * * MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Comparison between groups (2) • No difference was found between males and females, and between quadriplegic and paraplegic patients • ASIA C-D subgroup showed a significant inverse correlation between GH score and the elapsed time from the spinal cord lesion (p=0.034) MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Utility coefficients distribution • Estimated utility coefficients ranged from 0.32 to 0.96 (mean=0.62, SD=0.14) MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Univariate analyses Parameter Correlated R P Description parameter Lower values for older U Patient’s age -0.18 0.037 patients Cause of the Lower values for non U 0.23 0.008 lesion traumatic patients Cause of the Lower values for non PSI 0.2 0.023 lesion traumatic patients Patient’s Lower values for PSI 0.18 0.04 status inpatients • No significant correlations were found for MSI MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Conclusions • The concept of quality of life is certainly linked to the patient's residual motor abilities and alongside to his/her degree of autonomy • The questionnaire administration becomes important during the rehabilitation period, firstly in the short term and consequently in the long term, to monitor the patient’s progress MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Open issues • One concern that has been raised in the rehabilitation community about the SF-36 regards its inclusion of three questions referring to walking and two others that concern climbing stairs • Some critics have questioned the sensitivity of these questions, noting that most people lacking preserved motor function are fully limited in regard to all of these items • It is unclear how to manage these questions, if and how to modify them and what the new questions would assess MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Future developments • The study suggests that an extensive analysis could be performed considering other variables that can be correlated to the different SF-36 scales such as, for example, social and/or working integration, family support and the motherland for a comprehensive assessment of the patient without forgetting his/her cultural origins • A modified version of the SF-36 questionnaire can be implemented as proposed by Unalan et al. (2007) where concepts like “climbing stairs” and “walking” are replaced with the word “going” • Further researches are needed in this direction to develop valid and reliable instruments to assess the health status in people with SCI MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011

Thanks for your attention carla.rognoni@unipv.it MIE 2014, Istanbul, 2014 Carla Rognoni Angelo Nuzzo IIT@SEMM, Milan, 2011