Quality Of Life of Alzheimer's disease Patients in Egypt

Quality Of Life of Quality Of Life of Alzheimer's disease Alzheimer's disease

Patients in EgyptPatients in Egypt

Health-related quality of life Health-related quality of life (HRQOL) is an increasingly used (HRQOL) is an increasingly used

outcome measure in clinical trials outcome measure in clinical trials research. With respect to evaluating research. With respect to evaluating

new pharmacological agents, this new pharmacological agents, this phenomenon reflects a shift away from phenomenon reflects a shift away from

an exclusive emphasis on safety and an exclusive emphasis on safety and efficacy, and from research that in the efficacy, and from research that in the

past focused narrowly on laboratory past focused narrowly on laboratory and clinical indicators of morbidity and and clinical indicators of morbidity and

mortalitymortality (Moinpour,1994)(Moinpour,1994)..

Rationale of the work:Rationale of the work:

The lack of data on quality of life The lack of data on quality of life of mentally ill elders and of mentally ill elders and

contribution to improve the quality contribution to improve the quality of life of Egyptian Alzheimer’s of life of Egyptian Alzheimer’s

disease patients.disease patients. Hypothesis of the work:Hypothesis of the work:

Alzheimer’s disease patients Alzheimer’s disease patients may have some quality of life may have some quality of life

correlations that identify risk groups. correlations that identify risk groups.

This work was conducted in This work was conducted in three stages and each stage was three stages and each stage was carriedcarried out on different samples:out on different samples:

Stage I: Conceptualization of Stage I: Conceptualization of Quality of Life.Quality of Life.

Stage II: Instrument development Stage II: Instrument development (the Arabic Version of Quality of (the Arabic Version of Quality of

Life Profile Seniors Version).Life Profile Seniors Version). Stage III: Use of Instrument in Stage III: Use of Instrument in studying Quality of Life of mild studying Quality of Life of mild

Alzheimer’s disease cases.Alzheimer’s disease cases.

Stage I: Stage I: Conceptualization of Quality of Conceptualization of Quality of

LifeLife

This is the fist step in our research; This is the fist step in our research; old persons were asked old persons were asked (what does the (what does the

term “quality of life” mean to you?)term “quality of life” mean to you?) and and (what are some areas of concern to (what are some areas of concern to

seniors?)seniors?) guided by the work done in guided by the work done in the research of the working group on the research of the working group on

quality of life for faculty staff and quality of life for faculty staff and students in the University of Waterloo, students in the University of Waterloo,

Ontario, Canada Ontario, Canada (Denis, 1997)(Denis, 1997)..

The process of data collection was The process of data collection was done among different elderly people done among different elderly people

groups through: groups through:

1-Written comments:1-Written comments: Health and work are the major trends as evidenced Health and work are the major trends as evidenced

by written comments from 20 professors.by written comments from 20 professors.2-Hearings:2-Hearings:

Religion and social aspects are the major trends as Religion and social aspects are the major trends as evidenced by hearings from 20 people in a mosque.evidenced by hearings from 20 people in a mosque.

3-Open forum:3-Open forum: Social relations and their maintenance were found Social relations and their maintenance were found

to be the major trends in this group.to be the major trends in this group.4-Interviews:4-Interviews:

Financial and health issues are the major trends as Financial and health issues are the major trends as evidenced by interviewing 30 of the patients evidenced by interviewing 30 of the patients

attending the memory clinic.attending the memory clinic.5-Existing reports:5-Existing reports:

Social and health issues are the major trends in Social and health issues are the major trends in this group.this group.

Stage II: Stage II: Instrument development Instrument development

(the Arabic Version of Quality (the Arabic Version of Quality of Life Profile Seniors Version)of Life Profile Seniors Version)

1. Highlighting The Centre of Health Promotion 1. Highlighting The Centre of Health Promotion Quality of Life Model:Quality of Life Model:

It defines QOL as: The degree to which a person enjoys the It defines QOL as: The degree to which a person enjoys the important possibilities of his/her life. In other words QOL is important possibilities of his/her life. In other words QOL is

uniquely identified for each individualuniquely identified for each individual.. According to it, QOL has three life domains: Being, According to it, QOL has three life domains: Being,

Belonging and Becoming. Being reflects “who one is” and Belonging and Becoming. Being reflects “who one is” and has three subdomains: physical, psychological and spiritual has three subdomains: physical, psychological and spiritual

being while Belonging domain concerns the person’s fit being while Belonging domain concerns the person’s fit with his or her environments and has three subdomains: with his or her environments and has three subdomains:

physical, social and community. The Becoming domain physical, social and community. The Becoming domain refers to the purposeful activities carried out to achieve refers to the purposeful activities carried out to achieve

personal goals, and hopes, it also has three subdomains: personal goals, and hopes, it also has three subdomains: practical, leisure and growth Becoming. practical, leisure and growth Becoming.

The questions in each domain and The questions in each domain and subdomain were judged by the subdomain were judged by the

supervisors of the work to ensure its supervisors of the work to ensure its applicability in our Egyptian culture and applicability in our Egyptian culture and especially in our study subjects who are especially in our study subjects who are Alzheimer’s disease patients and all the Alzheimer’s disease patients and all the

items were found to be applicable to items were found to be applicable to them and this supposition was them and this supposition was

documented by a pilot study which took documented by a pilot study which took two months duration and was done on two months duration and was done on

20 Alzheimer’s disease cases.20 Alzheimer’s disease cases.

2. Reliability of the scale:2. Reliability of the scale:

Reliability refers to the extent to which the Reliability refers to the extent to which the measure yields the same number or score each measure yields the same number or score each

time it is administered provided that all other time it is administered provided that all other things being equal things being equal (Beusterien et al, 1996)(Beusterien et al, 1996)..

Two forms of reliability were done in our study: Two forms of reliability were done in our study: Inter-rater reliability. Inter-rater reliability.

Internal consistency reliability. Internal consistency reliability. The number of subjects in the reliability and also in The number of subjects in the reliability and also in

the validation studies is 50 Alzheimer’s disease the validation studies is 50 Alzheimer’s disease patients (mild cases).patients (mild cases).

3. Validation of the scale:3. Validation of the scale:

Here, validation of the scale is done Here, validation of the scale is done by construct validityby construct validity..

Stage III: Stage III: Use of Instrument in Use of Instrument in

studying Quality of Life of studying Quality of Life of mild Alzheimer’s disease mild Alzheimer’s disease

casescases

Sociodemographic characteristics of the Sociodemographic characteristics of the sample:sample: The studied group comprised 70 Alzheimer’s disease The studied group comprised 70 Alzheimer’s disease patients who participated to all steps of the scale.patients who participated to all steps of the scale.

The percentage of males and females in the study The percentage of males and females in the study populationpopulation

Male30%

Female70%

Male Female

The percentage of patients in each age The percentage of patients in each age groupgroup

60-65 Yrs22.8%

65-70 Yrs57.2%

70-75 Yrs20.0%

60-65 Yrs 65-70 Yrs 70-75 Yrs

The level of education of the patientsThe level of education of the patients

Read & Write14.3%

Primary21.4%

Middle12.8%

High14.3% Illiterate

37.2%

Illiterate Read & Write Primary Middle High

The satisfaction with income in the The satisfaction with income in the study populationstudy population

Non-satisfactory65.7%

Satisfactory34.3%

Satisfactory Non-satisfactory

Patients’ occupationPatients’ occupation

Skilled14.3%Semi-professional

14.3%Professional

5.7%

Semi-skilled8.6%

Housewife47.1%

Non-skilled10.0%

Non-skilled Semi-skilled Skilled

Semi-professional Professional Housewife

Patients’ marital statePatients’ marital state

Unmarried8.6%

Divorced5.7%

Married50.0%

Widow35.7%

Unmarried Married Widow Divorced

Meaning of disease

I.Consistency in identifying meaningful losses: A. Loss of independence. B. Ability to do meaningful work. C. Loss of meaningful past relationships. D. Loss of positive leisure activities. E. Fear of embarrassment. F. Loss of control over life decisions.

II. Identified changes in family relationships: A. Loss of intimacy with spouse. B. Increased supervision (e.g. parenting by spouse). C. Imposed limitations on activities.

III. Self-concept perceptions: A. Strong identification with the disease. B. Loss of identification with role functions.

A) Trends showing in the study:A) Trends showing in the study:

IIII. Unexpected finding: Impact of QOL testing on the individual.

Life History ReviewI. Retrieved memories are related to earlier events.

II. Work is central focus for both men and women

working outside the home. III. Concrete events are easier to discuss than more

abstract aspects of the past (e.g. feelings).

Table continuedTable continued

QOL Domain P value

Being Physical Psychological Spiritual

0.1010.0880.081

Belonging Physical Social Community

0.0330.0820.067

Becoming Practical Leisure Growth

0.0710.0390.110

Total Scale 0.071

B) Sociodemographic characteristics associated with quality B) Sociodemographic characteristics associated with quality of life scores:of life scores:

Correlation of sex with sub-domain and total scale quality of life Correlation of sex with sub-domain and total scale quality of life scores: -scores: -

Significant association was found between QOL and sex being better in Significant association was found between QOL and sex being better in females (P = 0.033).females (P = 0.033).

QOL Domain P value

Being Physical Psychological

Spiritual

0.0470.0810.072

Belonging Physical

Social Community

0.1200.2420.048

Becoming Practical

Leisure Growth

0.0910.230.09

Total Scale 0.06

Correlation of age with sub-domain and total scale quality of Correlation of age with sub-domain and total scale quality of life scores: -life scores: -

Significant association was found between QOL and age being less Significant association was found between QOL and age being less in the older age groups (P = 0.047). in the older age groups (P = 0.047).

QOL Domain P value


0.0710.0020.061


0.1320.0780.043


0.2110.1720.081

Total Scale 0.012

Correlation of education with sub-domain and total scale Correlation of education with sub-domain and total scale quality of life scores: -quality of life scores: -

Highly significant association was found between QOL and education Highly significant association was found between QOL and education being better in the more educated (P = 0.002).being better in the more educated (P = 0.002).

QOL Domain P value


0.1210.0950.129


0.0730.0680.210


0.0390.0620.102

Total Scale 0.066

Correlation of income with sub-domain and total scale Correlation of income with sub-domain and total scale quality of life scores: -quality of life scores: -

Significant association was found between QOL and income being Significant association was found between QOL and income being better with higher income (P = 0.039).better with higher income (P = 0.039).

QOL Domain P value

Being Physical Psychological

Spiritual

0.0610.0080.131


0.1800.0710.064


0.1310.1100.082

Total Scale 0.097

Correlation of occupation with sub-domain and total scale Correlation of occupation with sub-domain and total scale quality of life scores: -quality of life scores: -

Highly significant association was found between QOL and Highly significant association was found between QOL and occupation of the patients (P = 0.008).occupation of the patients (P = 0.008).

C) Quality of life profile of the C) Quality of life profile of the patients:patients:

A final analysis in the QOL profile of A final analysis in the QOL profile of

the patients examined the patients examined the the relationship of aggregate control relationship of aggregate control

and aggregate opportunities and aggregate opportunities scores to QOL Scoresscores to QOL Scores:: - -

Aggregate control and opportunities Aggregate control and opportunities scores showed scores showed very high significant very high significant

associationassociation (p (p == 0.0009) with all 0.0009) with all domain and sub-domain QOL scores. domain and sub-domain QOL scores.

Symptom QOL score: mean (SD) P valueYes No

Psychotic features 0.77 (0.63)n = 17

1.55 (0.66)n = 53

0.038

Sleep disorders 0.84 (0.54)n = 15

0.99 (0.46)n = 55

0.91

Behavioral changes 1.07 (0.74)n = 25

1.11 (0.76)n = 45

0.13

D) The relationship between quality of life and D) The relationship between quality of life and symptom profile:symptom profile:

The relationship between QOL score (total score) and The relationship between QOL score (total score) and symptom profile was of the significant P value symptom profile was of the significant P value (P = 0.038) (P = 0.038) for for

having psychotic features and of non-significant value for other having psychotic features and of non-significant value for other symptomssymptoms..

Cohen (1996)Cohen (1996) hypothesizes: with the hypothesizes: with the exception of psychosis, many of the exception of psychosis, many of the

psychiatric symptoms and behavioral psychiatric symptoms and behavioral disturbances in early and middle states of disturbances in early and middle states of Alzheimer’s disease result when patients, Alzheimer’s disease result when patients,

family members and health care family members and health care professionals are unable to perceive and professionals are unable to perceive and

cope successfully with the deterioration or cope successfully with the deterioration or reactions to the deterioration.reactions to the deterioration.

It has been repeatedly shown that the so-It has been repeatedly shown that the so-called objective and subjective aspects of called objective and subjective aspects of

QOL are not highly correlated. For example, QOL are not highly correlated. For example, income typically does not predict life income typically does not predict life

satisfaction satisfaction (Padilla et al, 2001)(Padilla et al, 2001). .

The low correlation between QOL and The low correlation between QOL and some socio-demographic variables (in some socio-demographic variables (in

our study: residence, housing and our study: residence, housing and marital state) was also documented marital state) was also documented

by by Padilla et al (2001)Padilla et al (2001). .

Behavioral disturbances were poorly Behavioral disturbances were poorly related to QOL as shown by the study related to QOL as shown by the study

of of Godlove Mozley et al (2000)Godlove Mozley et al (2000) which also showed that psychotic which also showed that psychotic

symptoms are correlated with QOL symptoms are correlated with QOL and this coincides with the results of and this coincides with the results of

our study.our study.

There are four, somewhat overlapping, There are four, somewhat overlapping, reasons why the Quality Of Life Profile reasons why the Quality Of Life Profile

Seniors Version approach is relevant for Seniors Version approach is relevant for health promotion. The domains of QOL health promotion. The domains of QOL may serve as a determinant of health; may serve as a determinant of health;

improvement in the domains may be seen improvement in the domains may be seen as a desired goal of health promotion as a desired goal of health promotion

activities; assessment within the domains activities; assessment within the domains can serve as an indicator of needs and our can serve as an indicator of needs and our

model draws attention to the role of model draws attention to the role of environments in supporting the promotion environments in supporting the promotion of health with its emphasis on control and of health with its emphasis on control and

opportunities which are also consistent opportunities which are also consistent with developments in health promotion. with developments in health promotion.

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Quality Of Life of Alzheimer's disease Patients in Egypt