C20 MEASURING QUALITY OF LIFE IN HEALTH CARE.
TENNANT A
University of Leeds, United Kingdom
E-mail address for correspondence: [email protected]
Keywords: quality of life, subject well being
The measurement of health status and quality of life has been an issue of debate for over 50 years. Health status, currently defined by the International Classification of Functioning, Disability and Health (ICF) (WHO, 2002) has, throughout that period, been identified with impairment, activity limitation and participation. In the mid 1970's Torrance introduced the notion of a health status index, which was to form the basis of much of the health economics evaluations we see today. Concurrent to the development and use of health status, the measurement of Subjective Well Being (SWB) provided complementary measurement of quality of life (QoL) thought that early period. However, at some point in the early 1980's health status was re-branded as Health Related Quality of Life (HRQoL) with the basic assumption that, for example, with an impairment quality of life is diminished. This caused considerable dissatisfaction in academia, and led to the development of new ways to measure QoL, notably the individualised and the ‘needs-based’ approaches to QoL, characterised by theory driven approaches and their closer association to SWB than HRQoL.
C21 A NATIONAL SURVEY OF QUALITY OF LIFE FOR ALS PATIENTS IN THE UNITED STATES
STEPHENS HE1, WALSH SM2, SIMMONS Z1
1Penn State University College of Medicine, Hershey, Pennsylvania 2ALS Association, Greater Philadelphia Chapter, Philadelphia, Pennsylvania, United States
E-mail address for correspondence: [email protected]
Keywords: quality of life, national, internet research
Background: Multidisciplinary ALS clinics are increasing in number, and have demonstrated in Europe to result in higher quality of life (QOL) and prolonged lifespan for those who attend such clinics vs. those who do not. No such comparisons exist in the United States.
Objectives: To survey a cross-section of ALS patients in the Unites States in order to assess and compare QOL, and treatments and services received, in multidisciplinary clinic participants vs. non-participants.
Methods: Individuals with ALS completed a study questionnaire on paper or via the internet. Measures included the ALS-Specific Quality of Life Instrument (ALSSQOL), the ALS Functional Rating Scale-Revised (ALSFRS-R), demographic questions, disease history and treatments and services received.
Results: 303 questionnaires were completed. Sixty-two percent of the respondents were male, total sample mean age = 56.6 years, mean disease duration = 5 years, and mean ALSFRS-R = 25.7/ 48. There were no significant differences in demographics and disease characteristics between ALS clinic participants and non-participants. Seventy-eight percent of the respondents regularly attended a multidisciplinary clinic. Distance (28%) and the perception of no advantage to a clinic (24%) were the most frequent reasons for non-attendance. The average total ALSSQOL score did not differ between ALS clinic and non-clinic patients (6.3/10 vs. 6.05/10, p = 0.2). The single QOL subscale difference between the groups was for “interaction with people and the environment,” which was higher in ALS clinic participants (p = 0.02). ALS clinic patients compared to non-clinic patients more frequently used riluzole, pain medication, non-invasive positive pressure ventilation (NIPPV), augmentive communication devices, and experimental medications (p <0.05). ALS clinic patients reported more frequent use of a neurologist, nurse, respiratory therapist, pulmonologist, physical therapist, occupational therapist, counsellor, social worker, nutritionist and speech pathologist than non-clinic patients (p < 0.05). Non-clinic patients reported more frequent tracheostomy/mechanical ventilation (p = 0.05). The two groups reported similar rates of use of antidepressants, cramping/spasticity medications, treatments for sleep, constipation, and urinary urgency, complementary and alternative medicines, in-home care, gastrostomy tubes and pastoral care.
Discussion: QOL in multidisciplinary ALS clinic patients in the United States is similar to that of non-clinic patients. However, ALS clinic patients used a far broader variety of treatments and services, including life extending treatments like NIPPV and riluzole. This raises a number of questions: Is more intensive care “better” care? In order to maintain QOL, is more intensive care needed by some patients than by others? Do patients gravitate toward a care experience which is most suitable for them? Can a more intensive ALS care experience extend lifespan? Further studies are needed to answer these questions, but it seems clear that the relationship between QOL and multidisciplinary care is a complex one.
C22 VALIDATION OF A SHORTER ALS-SPECIFIC QUALITY OF LIFE INSTRUMENT: THE ALSSQOL-R
FELGOISE S1, RODRIGUEZ J1, STEPHENS H2, WALSH S3, BREMER B4, SIMMONS Z2
1Philadelphia College of Osteopathic Medicine, Philadelphia, PA, 2Pennsylvania State University College of Medicine, Hershey, PA, 3ALS Association Greater Philadelphia Chapter, Ambler, PA, 4Pennsynvania State University Harrisburg, Middletown, PA, United States
E-mail address for correspondence: [email protected]
Keywords: quality of life, multidisciplinary care, function
Background: Because ALS cannot be cured or the progression halted, much of the care for ALS patients focuses on improving quality of life (QOL). A valid, disease-specific measure of QOL for patients with ALS would enhance clinicians and researchers abilities to target and monitor interventions. We previously demonstrated the construct, convergent, and discriminant validity of the 59-item ALS-Specific Quality of Life Instrument (ALSSQOL). Principal component analysis suggested a 6 factor model with 46 items: Negative Emotion (NE;), Interaction with People and the Environment (IPE), Physical Functioning (PF), Intimacy (INT), Religiosity (REL), and Bulbar Function (BF).
Objective: To validate the 6-factor model and establish psychometric properties for the 46-item revised QOL measure (ALSSQOL-R).
Methods: Ten university-based ALS clinics recruited individuals with definite, probable, or probable laboratory-supported ALS. All sites collected the ALSSQOL, demographics, strength (manual muscle testing; MMT), function (ALS Functional Rating Scale-Revised, ALSFRS-R), individual rated overall QOL (McGill Quality of Life Single-Item Score), and either the World Health Organization QOL Instrument or the ALS Assessment Questionnaire 40. At least two sites each also collected data using additional measures to validate at least one factor of the ALSSQOL-R: 1) NE: Center for Epidemiological Study –Depression, the Brief Symptom Inventory-18, Social Problem-Solving Inventory-Revised- Short Form; 2) IPE: Satisfaction With Life Scale, Multidimensional Perceived Social Support Scale; 3) PF: ALSFRS-R, MMT, ALSAQ-40 subscales; 4) INT: Personal Assessment of Intimate Relationships, 5) REL: Fetzer, Facit Spirituality-12, Idler Index of Religiosity; and 6) BF: ALSFRS-R; ALSAQ-40 subscales. Confirmatory factor analysis using an oblique solution, Chronbach's alpha, Pearsons correlations, and measures of central tendencies and frequencies, were conducted.
Results: 279 ALS patients were enrolled. Chronbach's alpha scores demonstrated high internal consistency within each factor, ranging from 0.72 to 0.92. Patients reported a moderately high QOL (mean 6.93, SD = 1.30, on a 1–10 scale), with substantial variance (3.28 to 9.71). The ALSSQOL-R correlated positively and moderately (0.51 to 0.66) with other measures of QOL. Physical function (ALSFRS, MMT) had a low to no correlation with QOL (r = 0.09, ns, and 0.23, p = 0.00, respectively). Tests of convergent and discriminant validity for each factor revealed moderate to high (0.40 to 0.83) correlations (p <0.001) between factor subscales and tested associated measures.
Discussion and Conclusions: The psychometric properties of the 46-item ALSSQOL-R are consistent with those established for the 59-item version with an independent sample. Thus, the ALSSQOL-R shows promise as a useful instrument for measuring QOL in patients with ALS. It has good construct, concurrent, convergent and discriminant validity. Its sensitivity seems to reveal individual differences, and analysis of aggregate data appears meaningful and useful for clinical and research purposes. Additional studies to generate and validate a brief screening version of the ALSSQOL-R are planned.
C23 GIVING THE DIAGNOSIS OF ALS AND PATIENT'S CHOICE IN JAPAN
OGINO M1, OGINO Y2, SAKAI F1
1Kitasato University, Sagamihara, 2Toshiba Rincan Hospital, Sagamihara, Kanagawa, Japan
E-mail address for correspondence: [email protected]
Keywords: tracheostomy ventilation, autonomous-decision making, ALS in Japan
The rate of ALS patients on tracheostomy ventilation in Japan is about 15–17%, which is quite high compared to cases in other countries. There have been a variety of observations and reasons to try to explain the difference, such as the insufficiency of giving diagnosis and necessary medical and nursing information to patients, the influence of the desire and belief of a patient's family and physician, and/or the lack of an environment where decision making is encouraged.
In this paper we will analyze the autonomous-decision making environment where the Japanese ALS patients were situated, based on the data we collected from 110 ALS patients in total who visited our hospital continuously for more than six months in the past 5 years. We will discuss whether giving the diagnosis and necessary provision of information is properly done and how decision-making is organised to observe the patient's choice. Based on our data and experience, we observed that out of 110 patients, 101 (92%) patients were given the diagnosis of ALS and were fully informed at each stage of progression in an appropriate manner. For the remaining 9, 2 had dementia, 1 was considered to be too old to be informed, 4 were already ventilated at the previous hospitals before being given a diagnosis, and 2 were ventilated, according to their families’ desire, more than 10 years ago. Out of the 101, 4 patients’ final decisions were not known to us after leaving us. 85 patients had to make a prompt decision on whether or not to be permanently ventilated. We observed that 82 patients (96%) made their own decision, out of which 69 patients (84%) chose not to be ventilated. 14 patients (17%) chose to be permanently ventilated. As for the 3 patients who were still in process of making decision, 2 patients desperately needed to decide promptly and 1 patient had to be permanently ventilated in an emergency.
1 presented a comparative study of the end of life decision making among American, Japanese-American, and Japanese. They argued that the stronger the Japanese traditional culture presents itself, the less a given diagnosis was and the necessary information provided and less Japanese patients make their own decision. However, our data and observations show that 97% of our patients made their own decision after being given a diagnosis and all the necessary information. We practice the guideline by AAN faithfully and inform our patients of the absence of withdrawal right in Japan even in the state of TLS. Furthermore we fully provide palliative care to the extent of administering morphine and the usage rate of NPPV is about 80%. This leads us to believe the patients choose to be permanently ventilated not out of fear and not in order to escape the anticipated pain and agony at the terminal stage. Nonetheless the rate of our ventilated patients is about 17% which conforms to the national average ventilated rate and is higher than other countries. Our accounts include much less financial burden because of the Japanese national health insurance, that the presence of role models of the contented ventilated patients is widely reported, that the presence of those physicians who are sympathetic towards the way of life the role models lead, that Japanese patients might tend to let family desire and decision prevail, and that the perception the “Life is heavier than the earth” is prevalent. We conclude that the high rate of the ventilated patients in Japan cannot be explained by the widely speculated reasons of lack of information giving and the lack of autonomous-decision making.
C24 END-OF-LIFE PRACTICES IN ALS IN THE NETHERLANDS
MAESSEN M, VELDINK J, ONWUTEAKA-PHILIPSEN B, VAN DEN BERG L
1UMC Utrecht, Netherlands, 2EMGO, VU University, Amsterdam, Netherlands
E-mail address for correspondence: [email protected]
Keywords: euthanasia, sedation, reasons
Background: Previous results show a relatively high rate (20%) of euthanasia or physician-assisted suicide (EAS) in ALS in the Netherlands between 1994 and 1998. These results correspond to data from Oregon (Oregon Department of Human Services) and Columbia University on the wish to hasten death in ALS patients. Apparently, a relatively high percentage of people suffering from ALS both within the Netherlands and abroad want the end of their life to be hastened. The factors that determine EAS are largely unexplored. Little is known about the factors that determine EAS. Most studies investigated attitudes of patients and physicians towards end-of-life issues, showing that education and religion might be major determinants, but data on factors that influence an actual decision on EAS hardly exist.
Objectives: We wanted to investigate which factors influence the decision on EAS in ALS and to determine whether rates are increasing over time.
Methods: 214 general practitioners and 198 informal caregivers of ALS patients who died between 2000–2005 in The Netherlands completed retrospective questionnaires on the circumstances around the patient's death.
Results: 35 patients (16.3%) decided on EAS between 2000–2005 compared to 20% of patients in 1994–1998 (p = 0.37). 31 (14.5%) patients died during continuous deep sedation in 2000–2005. EAS was associated with more education (p = 0.034) and not having a religion (p = 0.002). EAS took place mostly at home. The caregivers of patients who decided on EAS more often reported as reasons for life shortening: fear of choking (p = 0.02), no chance of improvement (p = 0.001), loss of dignity (p = 0.02), being dependent on others (p = 0.003) and fatigue (p = 0.005). The choice of EAS was not associated with quality of care items or depression.
Conclusions: End-of-life practices in ALS patients appeared stable over time. EAS did not show a significant relationship with quality of care according to the caregivers or with depression. Our results suggest that fear of choking and several subjective views may be important factors in explaining EAS in ALS.
References
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