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Hope in Sight: Living with Macular Degeneration

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Hope In Sight: Living With Macular Degeneration is the first medically accurate video ever produced on this extremely common eye disorder. In addition, the video images have been enhanced to make it easier to view for those with low vision. With a combination of 3-D graphics, commentary by a world expert, and documentary footage of three people who have successfully coped with macular degeneration, this video is both informative and inspirational.

The video is designed for the 1.7 million Americans who have macular degeneration and is particularly targeted for those who have recently been diagnosed, since this is a time when people often need both accurate information and reassurance that the disorder does not cause blindness and need not be the disability many people at first fear it will be.

Funded by National Eye Institute

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Distributor: NERI
Phone: 800.775.6374
E-mail: media@neriscience.com






Mean MQOL-HIV Index scores by symptom and illness severity:

Whalen's HIV Symptom Index

0-5

66.2

6-10

60.5

11-15

54.0

16-20

44.3

Bed days due to illness or injury in the past 2 weeks

None

65.6

1-12 days

49.2

Responsiveness of the MQOL-HIV to Quality of Life Changes in a Cohort of HIV+ Men

Smith, Kevin W,* Avis N,* Mayer, K.**
*New England Research Institutes, Watertown, MA, USA;
**Fenway Community Health Center and Brown University

Objective: Responsiveness, or sensitivity to change, is an important indicator of the validity of a measurement instrument. The purpose of this study was to evaluate the responsiveness of the Multidimensional Quality of Life Questionnaire for Persons with HIV/AIDS (MQOL-HIV).

Methods: The MQOL-HIV is a 40-item questionnaire measuring 10 domains that are important to the quality of life of persons infected with HIV. The MQOL-HIV Index, derived from these domains, provides an overall quality of life score. This instrument was administered three times (baseline, 2-week follow-up, and 6-month follow-up) to a longitudinal cohort of 92 HIV+ men at a Boston community health center. At the 6-month follow-up, subjects were asked to assess changes in their quality of life over the previous 5.5 months using a 7-point scale ranging from "a great deal worse" to "a great deal better". Changes in CD4 counts (baseline mean=350 cells/mm3; 33%<200 cells/mm3), hemoglobin (baseline mean=14.4 gm/dl) and symptom severity (Whalen's HIV Symptom Scale) were also tracked during the follow-up interval.

Results: After 5.5 months, 46% of the cohort reported that their quality of life had improved, 32% reported it was about the same as before, and 23% had gotten worse. These changes were highly correlated with changes in MQOL-HIV index scores (r=.52, p<.0001). Index score changes were also associated with changes in symptom severity (r=-.44). Self-assessed quality of life changes were unrelated to changes in CD4 counts (r=.01), and only weakly related to differences in hemoglobin levels (r=.10, p=.35). Correlations between self-reported changes in individual domains and MQOL-HIV domain scores ranged from r=.44 for financial status to r=-.20 for cognitive functioning.

Conclusions: These results provide strong evidence for the ability of the MQOL-HIV Index to detect changes in both quality of life and symptom severity in HIV+ men. Changes in hematologic parameters over time do not appear to be accurate markers of quality of life differences.

(Presented at the XI International Conference on AIDS, Vancouver, Canada; July, 1996.)

MQOL-HIV Results in Japan

The Japanese translation of the MQOL-HIV was adminstered to 375 people with HIV/AIDS from the AIDS Clinical Center in Tokyo and eight regional AIDS hospitals in Japan. The mean age of the sample was 36.5 years, 8% were women, and 32% were hemophiliacs.

Summary statistics for each of the 10 MQOL-HIV domains were:

Domain Mean Score SD Cronbach's Alpha

Mental Health

17.9

5.2

0.76

Physical Health

21.6

4.9

0.76

Physical Functioning

19.0

5.5

0.61

Social Functioning

19.5

5.7

0.74

Social Support

16.7

7.4

0.85

Cognitive Functioning

23.1

4.6

0.84

Financial Status

22.5

4.9

0.73

Partner Intimacy

18.4

7.2

0.82

Sexual Functioning

18.5

5.1

0.47

Medical Care

22.4

4.8

0.67

Source:

M. Watanabe, M. Ishihari, K. Nishimura, S. Oka and 8 regional AIDS hospitals.
AIDS Clinical Center, International Medical Center of Japan, Tokyo, Japan.

Health-related quality of life assessment in patients with HIV/AIDS using the Multidimensional Quality of Life Questionnaire for Persons with HIV/AIDS (MQOL-HIV): Results from the first survey in Japan.

Poster presented at the International Society of Quality of Life meeting, Vancouver, Canada, October 2000.

Two-week test-retest correlations were as high or higher for CardioRisk than for the HRAs in the field trial.

Risk factor Test-retest correlation Range of correlations in field trial

Systolic blood pressure

.63

.45-.87

Total cholesterol

.74

.58-.65

Relative weight*

.88

.76-.91

Family history

.73

.89-.90

Cigarette smoking

.98

.82-.89

Diabetes status

.92

NA

Age group*

.97

NA

Gender

1.00

NA

Total risk score*

.93

.43-.87

* = Based only on subjects who reported that their status had not changed between the baseline and follow-up interviews.

NA = Not Applicable

Correlations between physiologic measures and risk scores were higher for CardioRisk than for any other instrument.

Risk factor Validity correlation Range of correlations in field trial HRAS

Systolic blood pressure

.64

.00-.50

Total cholesterol

.56

.18-.26

Relative weight*

.80

.64-.74

Diabetes status

.88

NA

Age group*

.94

NA

Gender

1.00

NA

N = 380-386; NA = Not Applicable

CardioRisk had a significantly higher correlation with Framingham Heart Study risk estimates than any other appraisal.

CardioRisk (N = 386) Arizona Heart Test (N = 131) RISKO (N = 124) Determine Your Medical Age (N = 104)

Correlation with Framingham 12-yr. CVD risk estimate

.855

.656

.222

.718

R2 for age and gender only

.592

.673

.743

.758

R2 increase due to HRA

.176

.088

.021

.009

Compared to other instruments, respondents felt that CardioRisk was easier to understand, they learned more about their health, and they would be more likely to recommend CardioRisk to a friend.

Mean Score or Percent:
CardioRisk (N = 387) Range for field trial HRAS (N = 142-170)

Questions easy to understanda

4.42

3.24 – 4.37

Directions easy to understanda

4.44

3.08-4.02

Know information requestedb

3.30

2.60-3.43

Easy to calculate risk scorea

4.62

2.85-4.70

Easy to understand resultsa

4.35

3.32-4.57

Interested in resultsc

2.75

2.49-2.53

Amount learned about healthd

2.91

2.10-2.35

Recommend this HRA to a friend

94.0%

59.5% - 76.3%

a 5-point response scale, ranging from 1 = very difficult to 5 = very easy

b 1 = Know very little to 4 = know all

c 1 = not at all to 3 = very interested

d 1 = nothing at all, 4 = a lot

1: J Clin Epidemiol. 1993 Feb;46(2):153-62.
The Physical Activity Scale for the Elderly (PASE): development and evaluation
Washburn RA, Smith KW, Jette AM, Janney CA.
New England Research Institute, Inc., Watertown, MA 02172.

A Physical Activity Scale for the Elderly (PASE) was evaluated in a sample of community-dwelling, older adults. Respondents were randomly assigned to complete the PASE by mail or telephone before or after a home visit assessment. Item weights for the PASE were derived by regressing a physical activity principal component score on responses to the PASE. The component score was based on 3-day motion sensor counts, a 3-day physical activity dairy and a global activity self-assessment. Test-retest reliability, assessed over a 3-7 week interval, was 0.75 (95% CI = 0.69-0.80). Reliability for mail administration (r = 0.84) was higher than for telephone administration (r = 0.68). Construct validity was established by correlating PASE scores with health status and physiologic measures. As hypothesized, PASE scores were positively associated with grip strength (r = 0.37), static balance (r = +0.33), leg strength (r = 0.25) and negatively correlated with resting heart rate (r = -0.13), age (r = -0.34) and perceived health status (r = -0.34); and overall Sickness Impact Profile score (r = -0.42). The PASE is a brief, easily scored, reliable and valid instrument for the assessment of physical activity in epidemiologic studies of older people.

Publication Types:
Clinical Trial
Randomized Controlled Trial

PMID: 8437031 [PubMed - indexed for MEDLINE]

Physical Activity Scale for the Elderly (PASE)
Abstract

A Physical Activity Scale for the Elderly (PASE) was evaluated in a sample of community-dwelling, older adults. Respondents were randomly assigned to complete the PASE by mail or telephone before or after a home visit assessment. Item weights for the PASE were derived by regressing a physical activity principal component score on responses to the PASE. The component score was based on 3-day motion sensor counts, a 3-day physical activity diary and a global activity self-assessment. Test-retest reliability, assessed over a 3-7 week interval, was 0.75 (95% CI = 0.69 - 0.80). Reliability for mail administration (r = 0.84) was higher than for telephone administration (r = 0.68). Construct validity was established by correlating PASE scores with health status and physiologic measures. As hypothesized, PASE scores were positively associated with grip strength (r = 0.37), static balance (r = +0.33), leg strength (r = 0.25) and negatively correlated with resting heart rate (r = -0.13), age (r = -0.34) and perceived health status (r = -0.34); and overall Sickness Impact Profile score (r = -0.42). The PASE is a brief, easily scored, reliable and valid instrument for the assessment of physical activity in epidemiologic studies in older people.

Physical Activity Scale for the Elderly (PASE)
References

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