HI~LI~NE O U E L L E T T E - K U N T Z

A P I L O T S T U D Y IN T H E U S E O F T H E QUALITY OF LIFE INTERVIEW

SCHEDULE

(Accepted 27 December, 1989) ABSTRACT. The purpose of this study was to refine the Quality of Life Interview Schedule (QUOLIS9 approach to measuring the quality of life of developmentally handicapped adults who are unable to complete a written questionnaire or a verbal interview. Emphasis was placed on the evaluation of intra- and inter-rater agreement. Ten interviews were conducted. Informants were primarily parents and residential counselors. The results indicate that the QUOLIS 9 approach is generally acceptable to informants, the rating scales are sensitive, and the majority of scores have substantial to almost perfect correlations of intra- and inter-rater agreement.

Quality of life research is relatively new to the field of developmental handicap though the term "quality of life" is not. In other fields, namely oncology, gerontology and cardiology, the concept of quality of life has been examined systematically and measures have been developed and are used in the evaluation of different treatments and forms of care. Interest in measuring the quality of life of developmentally handicapped persons has surfaced recently. Quality of life measures specific to this group are emerging as the public policies of deinstitutionalization, community placement, mainstreaming and early intervention call for an outcome indicator sensitive enough for the evaluation of the shift in the provision of services. Indeed, Sharon Landesman points out that "the new buzz words in mental retardation are quality of life and personal life satisfaction." (1986, p. 141) In an article by Louis Rowitz (1989) entitled "Trends in Mental Retardation in the 1990's", a developing concern with quality of life is identified as one of the 22 trends the author predicts the field of mental retardation will face in the next 10 years. It has also been stated that " . . . quality of life may replace deinstitutionalization, normalization and community adjustment as the issue of the 1990's". (Schalock et al., 1989, p. 25) "IT]here have been few attempts within the field of developmental disabilities to provide a model for understanding the concept of quality Social Indicators Research 23: 283--298, 1990. 9 1990 KluwerAcademic Publishers. Printed in the Netherlands.

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of life." (Schalock et al., 1988, p. 93) Discussions of quality of life are often anecdotal and philosophical. This reflects attempts to understand the phenomena of quality of life as it relates to individuals who are developmentally handicapped. Since quality of life is an abstraction, initial research involving this concept must be largely qualitative in nature. Observational, phenomenlogical and ecological studies are first conducted. Once the concept is understood, it must be defined in measureable terms before quantitative research involving measures of quality of life can be undertaken. In the United States, four major models have been proposed to evaluate the quality of life of developmentally handicapped persons. The Community Adjustment Model (Halpern as cited in Schalock and Heal, 1988; Borthwick-Duffy, 1986), the Quality of Life Questionnaire (Keith et al., 1986) and the QOL Model (Goode, 1988) are directed at assessing the quality of life of adults. The Quality of Life Model (Borthwick-Duffy, 1986) is designed to be used in relation to children. The above-mentionned models presume that normalization and community integration enhance an individual's quality of life. In fact Keith and his colleagues explain that the Quality of Life Questionnaire is based on "the assumption that a person's quality of life is directly related to his/her independence, productivity and community integration/social relations". (1986, pp. 15--16) Sharon Borthwick-Duffy's model considers the child's residential environment, interpersonal relationships, community involvement and stability. In Canada, the Developmental Consulting Program (DCP) -- which is a Queen's University based academic and consulting group -- has developed an alternative approach to defining quality of life. DCP's model is not derived from the premise that normalization and community integration lead to enhanced quality of life. The Quality of Life Interview Schedule (QUOLIS9 conceived in 1988 by a multi-disciplinary team of DCP associates, is based on the recognition that disability implies a need for some form of support or assistance and that quality of life assessments must combine objective and subjective measures. QUOLIS 9 reflects the principles of rehabilitation and equalization of opportunity articulated in the World Programme of Action Concerning Disabled Persons (United Nations, 1983). QUOLIS ~ recognizes that

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needed supports must be available and accessible to developmentally handicapped persons if they are to achieve the goals of "full participation" and "equality" as described by the United Nations (1983). In addition, DCP's approach considers the individual's exercise of choice and his or her degree of contentment with supports. The assessment is individualized through the use of supplementary indicators for individuals with additional disabilites as well as by the inclusion of a review of the individual's personal characteristics such as energy level, sociability and reactivity to stress and recent life events such as the death of a significant other or a residential relocation. Figure 1 shows how statements or indicators are grouped according to 12 domains which are areas of support. Each indicator is then rated on four counts; that is according to four dimensions. The dimensions, domains and indicators selected are the result of an extensive literature search of observational studies and anecdotal reports of factors related to quality of life as well as the combined experience of DCP's multi-

]

QUOLIS INDICATORS BASIC

(44)

'

SUPPLEMENTARY

(34) --epilepsy --cerebral palsy -hearing impairment -visual impairment -psychiatric disorder --communication disorder --chronic illness

J DIMENSIONS

~

[ DOMAINS -health services

-family/guardianship -income maintenance --education/employment -housing & safety -transportation --social/recreational -religious/cultural -case management -advocacy -counseling -aesthetics

I'l support --- access --- participation --- contentment UALITY

OF LIFEINTERVIEWSCHEDULE Fig. 1. QUOLIS 9 indicators, domains and dimensions.

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disciplinary team. Figure 2 displays the 4 seven-point graphic rating scales used. In its current form, QUOLIS 9 is to be used to interview not the disabled adult but individuals who know him or her well. DCP chose this approach because associates were aware of the need to develop a particular approach which would allow the assessment of the quality of life of individuals whose degree of mental retardation or the presence of a communication disorder precludes their direct involvement in such an assessment. The informants which would ideally be a close relative or friend and a longtime primary worker are interviewed together. They are asked to comment on each indicator in terms of the availability and accessibility of support, the chosen level of participation, for or by the disabled individual, and the latter's apparent degree of contentment with the current situation. The interviewer then rates the informants' responses according to the 4 seven-point graphic scales.

Indicator N/A

Reason

Not Support Available Access

I

I

I P [[0pN~

I Full I 10pportunity[

I

Participation

I Never

Contentrnent

[ Discontent [

I Re~ ___ _ l

@ 1- T e r r i b l e

Available Fully Ii

I

Content

x ~ j/ 2-Unhappy

5-Mosl|y 6-Pleased 3-Mostly 4-Mixed Dissatisfied (abou! equally Satisfied s a t i s f i e d atl(I dissatisfied)

Fig. 2. QUOLIS9 rating scales.

7-De|ighted

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To refine DCP's approach to quality of life assessment, a pilot study in the use of QUOLIS ~ with emphasis on intra- and inter-rater agreement was undertaken. The object of the study was to determine if the proposed semi-structured approach is practical, acceptable, sensitive and reliable. Two hypotheses were formulated concerning the reliability of the interviewer's ratings: 9 9

a rater will give consistent ratings of an interview and three independent raters will give comparable ratings of an interview.

METHOD

Sample Agreement to participate in the study was obtained from a facility for developmentally handicapped persons in Southeastern Ontario, Canada. To be eligible for a QUOLIS ~ assessment, residents had to: 9 9 9

have a diagnosis of mental retardation, be 18 years of age or older, and have a STAFF and RELATIVE/FRIEND who were willing to be interviewed.

Ten interviews were completed. In determining the sample size, consideration was given to the estimated number of eligible residents, statistical requirements for power (three raters, 10 subjects, H0: R o ~< 0.4 vs Hi: R 1 -- 0.8, a -- 0.05, (1 - t ) = 80% (Source: Donner and Eliasziw, 1987, p. 445) and the time frame for completion of the study. Next of kin informants included parents, a cousin and a sister. Staff informants were primarily residential counselors. All subjects were judged by the informants as poor at expressive communication with unfamiliar partners. Two of the subjects had no formal mode of communication while two used sign language and the remaining six communicated by spoken language. Four subjects had a diagnosis of mild mental retardation, two of moderate mental retardation and four of severe mental retardation. All subjects had at least one additional disability, the most common being epilepsy (N -- 6) and communica-

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tion disorder (N ~- 6). Fifty percent of the subjects had had a major disruption in a relationship in the previous 12 months. Procedure The investigator (HOK) and a colleague (BS) were trained in the use of QUOLIS 9 by the individual who initiated the development of the instrument (BM). In order to allow multiple ratings, all interviews were videotaped using a camera on a fixed mount. HOK, BS and BM were the three independent raters for the study. HOK and BS were present at all interviews and randomly assigned to conduct the interviews such that, for each interview, one was the interviewer-rater and the other was the second rater. BM was the third rater who rated videotapes of the interviews. HOK rated all interviews twice; "live", either as interviewer-rater or second rater, and from viewing the video tape at least two weeks following the initial rating. HOK prepared narrative reports of each interview. These reports were sent to the respective informants. The reports were derived from the subject's QUOLIS 9 scores and details of the interview. One week following the mailing of the report, HOK called the informants; their comments on the accuracy of the report were solicited, recorded and are discussed later in this article. RESULTS

Overall QUOLIS 9 scores ranged from 91.20 to 127.93 (mean = 113.63; standard deviation -- 11.54). Table I depicts the variation in dimension scores for the 12 domains (Possible range of scores: 5 to 35). The scores obtained from the pilot study are not to be generalized. They are reported here only to illustrate the ability of the instrument to detect variations among subjects, dimensions and domains. The variation among subjects is given by the standard deviation for each of the 48 scores reported in Table I. Variation in the availability of health services and income maintenance supports for the sample was minimal to non-existent while the availability of religious/cultural and counseling supports was much more varied. Large variations among

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TABLE I Mean scores (x) and standard deviations (s.d.) from data set HKO (N = 10) Dimensions

O

(s.d.)

support

access

participation

contentment

health services familyguardianship income maintenance education, training & employment housing & safety transportation

35.00 (0.00) 32.63 (4.73) 34.15 (1.56) 32.94 (2.89)

32.98 (3.30) 30.79 (5.69) 33.38 (3.23) 27.28 (8.69)

31.85 (3.73) 28.13 (6.75) 32.43 (2.87) 21.65 (10.27)

24.73 (3.46) 27.58 (5.35) 23.14 (3.57) 23.63 (3.99)

33.48 (2.62) 33.17 (2.69) 33.60 (4.43) 32.50 (6.35) 28.92 (4.94) 33.13 (2.84) 31.23 (4.35) 32.38 (7.03)

31.40 (5.65) 31.33 (5.63) 28.97 (8.89) 31.83 (5.30) 27.25 (6.62) 33.08 (3.20) 29.93 (5.69) 30.54 (7.16)

30.05 (5.47) 30.08 (7.91) 24.69 (10.14) 14.80 (10.27) 23.33 (8.85) 16.75 (9.99) 26.52 (6.17) 24.17 (9.15)

24.75 (6.42) 25.25 (4.06) 24.53 (3.93) 25.00 (5.14) 22.53 (4.35) 21.32 (2.57) 24.07 (4.09) 21.88 (3.08)

social, recreational religious, cultural case management advocacy aesthetics counseling

subjects were noted in the assessment of access to and participation in most supports, particularly education, training and employment, religious/cultural, social/recreational, advocacy and counseling Variation among dimensions and domains can be examined by comparing the 48 mean scores given in Table I. Since participation scores are affected by access scores which are dependent on support scores, the majority of high scores are found under support, fewer fall under access and still fewer are measures of participation. Contentment

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290

scores obtained from the pilot study generally fall in a middle range -that is between 20 and 30. The intra-class correlation coefficient (R) was used to assess the degrees of intra- and inter-rater agreement in Q U O L I S 9 scores. The results are summarized in Tables II and III. For clarity and simplicity, the scores lacking substantial agreement (/~ ~< 0.6) have been circled. As can be seen in Table II, 73% (35/48) of the scores can be accepted in terms of intra-rater agreement. The contentment scores have the highest correlations; these range from 0.79 to 0.99 for given TABLE II Intraclass correlation coefficients (/~) of intra-rater agreement for QUOLIS 9 scores (N E 10) (number of ratings = 2) Dimensions

.~ E

lower limit* magnitude**

support

health services

f ~

familyguardianship

@

income maintenance

0.86 @ 0.60 almost perfect

education, training & employment

f ~

housing & safety

~ ~

o C2

access

0.00 ~,

p a r t i c i p a t i o n contentment

0.65 0.23 substantial @

0.26 ~

0.84 0.98 0.57 0.91 almostperfect almostperfect 0.87 0.94 0.62 0.84 almost perfect almostperfect

@

0.86 0.63 almost perfect

0.94 0.93 0.93 0.84 0.80 0.80 almost perfect almostperfect almostperfect 0.92 0.91 0.96 0.77 0.73 0.88 almost perfect almostperfect almostperfect

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TABLE H (Continued)

Dimensions

lower limit* magnitude**

O

support

access

participation

contentment

transportation

0.83 0.55 almost perfect

0.60 0.12 moderate

0.79 0.46 substantial

social, recreational

0.98 0.95 almost perfect

0.88 0.67 almost perfect

0.89 0.70 almost perfect

~ ~

0.84 0.57 almost perfect

0.94 0.84 almost perfect

0.82 0.54 almost perfect

0.99 0.96 almost perfect

~

0.91 0.75 almost perfect

0.86 0.63 almost perfect

0.93 0.79 almost perfect 0.79 0.47 substantial

0.95 0.85 almost perfect 0.83 0.47 almost perfect

0.88 0.65 almost perfect 0.95 0.83 almost perfect

religious, cultural

0.67 0.20 substantial

case management

0.63 0.09 substantial

advocacy

aesthetics counseling

0.91 0.75 almost perfect 0.73 0.37 substantial

0.78 0.45 substantial

* lower limit of 95% confidence interval for/~. ** based on Landis and Koch's divisions as cited in Donner and Eliasziw, 1987. *** not statistically significant. domains. T h e higher levels of correlation in this dimension are likely attributable to the use of the terrible to delighted scale.* Intra-rater agreement for participation scores are also generally high (average value f o r / ~ -- 0.79). T h e investigator is c o n c e r n e d with intraclass correlation coefficients

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~< 0.60. Of the 49 scores resulting from a QUOLIS 9 assessment, 13 lack this level of intra-rater agreement. In order to enhance the intrarater agreement of these scores, one first needs to determine whether a specific indicator, the domain as a whole, or the scale used to measure the specific dimension is problematic. Three remedies can then be TABLE III Intraclass correlation coefficients (/~) of inter-rater agreement for Q U O L I S 9 scores (N = 10) (number of raters = 3) Dimensions

support

lower limit * magnitude**

health services

/ ~

0.28

access

~

0.79 0.57 substantial

participation

contentment

0.75 0.51 substantial

0.65 0.37 substantial

come

083

maintenance

O

0.64 almost perfect

education, training & employment

/f ~

housing & safety

~ ~

transportation social, recreational

0.40

"N

0.72 0.46 substantial 0.64 0.36 substantial

0.89 0.73 almost perfect

0.90 0.78 almost perfect

0.79 0.57 substantial

0.79 0.59 substantial

0.78 0.55 substantial

0.92 0.83 almost perfect

0.66 0.38 substantial 0.95 0.88 almost perfect

0.66 0.37 substantial 0.93 0.83 almost perfect

0.85 0.67 almost perfect 0.91 0.80 almost perfect

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TABLE III (Continued)

Dimensions

lower limit* magnitude**

support

access

religious, cultural

case management

advocacy

0.64 0.36 substantial ~

counseling

contentment

0.62 0.34 substantial

0.92 0.82 almost perfect

0.73 0.48 substantial

0.76 0.54 substantial

0.82 0.63 almost perfect

0.95 0.90 almost perfect

0.73 0.48 substantial

0.74 0.50 substantial

0.75 0.47 substantial

0.86 0.70 almost perfect

~

E ()

aesthetics

participation

0.61 0.30 substantial

0.81 0.66 almost perfect

* lower limit of 95% confidence interval for/~. ** based onLandis and Koch's divisions as cited in Donner and Eliasziw, 1987. *** not statistically significant.

implemented; an indicator may need to be reworded, a domain may require clarification, or a scale may necessitate revision. Since seven of the problematic scores fall under the dimension of support, changing the support scale to a dichotomous variable would eliminate the potential for inconsistent ratings in this dimension. Four unreliable scores are measures of access and two are measures of participation. The use of 'descriptive' scales for access and participation would likely enhance the intra-rater agreement for these dimensions as the terrible-delighted scale did for the rating of contentment.

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The other scores lacking intra-rater agreement refer to access to supports within the domains of family-guardianship, income maintenance, religious, cultural and advocacy and participation in activities related to income maintenance and transportation. The lack of intrarater agreement in these 6 scores is not consistent within a dimension or across a domain. It is recommended that intraclass correlation coefficients for the 'basic' indicators, which produce the above-mentioned scores, be derived and examined to determine which refining actions are most likely to enhance the intra-rater agreement of the six scores listed. The data from this pilot study could be used for this more detailed analysis of intra-rater agreement. For the purposes of this pilot study, the same levels of correlation were considered acceptable for intra-rater and inter-rater agreement (/~ > 0.60). According to this standard, 65% (31/48) of the QUOLIS 9 scores have inter-rater agreement (see Table HI). As for intra-rater agreement, correlations are highest among contentment scores (0.48 to 0.95 for specific domains) followed by the correlations for participation scores (mean value for/~ ----0.70). The majority of the 17 scores having moderate or weaker degrees of inter-rater agreement (/~ ~< 0.60) correspond to the rating of support. As mentioned previously, the recommended changes to the structure of the support scale should remedy this lack of reliability. Because the unreliable scores with respect to inter-rater agreement largely relate to three domains (familyguardianship, income maintenance and counseling), thereby suggesting the intrusion of rater subjectivity in interpreting the meaning of either these domains or the terminology employed in their respective indicators, it is recommended that the definitions inherent to these domains and their respective indicators be written and included in the manual to interviewers. Where necessary specific indicators should be reworded to prevent interpretation by the interviewer. L ~ ~ Since this thesis was a pilot study in the use of QUOLISr its limitations must be noted and considered in future studies involving the instrument. Not having used the instrument systematically prior to this study, the process employed for selecting and preparing informants was

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somewhat rudimentary. As a result, some informants did not understand questions or lacked the information to answer the questions. Furthermore, the selection of informants for subjects who have no relative or friend willing to be interviewed must be examined, and the possibility of interviewing more than two informants when the subject spends most of his or her time at school or work also needs to be addressed. The data on QUOLIS ~ scores and their variation, made available through this study, cannot be generalized as they were computed from only 10 assessments, nine of which concern residents of the same facility. In addition, since no subjects had a diagnosis of profound mental retardation, a generalization of the scores obtained to this group would be erroneous, and it has not yet been demonstrated that the QUOLIS e approach would be practical when assessing the quality of life of individuals with this degree of mental retardation. A third limitation relates to the choice of interviewers and raters for the pilot study. The three raters were involved in the development of the instrument; they are familiar with the principles on which QUOLIS ~ is based as well as the scales chosen to rate the four dimensions. The intra-rater agreement and inter-rater agreement obtained on the majority of the scores reflect this a priori knowledge and understanding. Extensive training and monitoring of future interviewer-raters will be necessary for maintaining the integrity of QUOLIS r For logistical reasons, specifically the time available, the commitment of raters and interviewers, the number of consents obtained, and the number of potential subjects, the investigator chose to increase the number of raters rather than the number of subjects to satisfy statistical requirements for power. While this decision had no bearing on the coefficients of inter-rater agreement, it did decrease the statistical power of the assessment of intra-rater agreement and the generalizability of the QUOLIS ~ scores. CONCLUSION

In summary, keeping in mind the need for specific revisions to the interview schedule itself and a more elaborate protocol for the activities preceding and following the actual interview, DCP's approach can be

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OUELLETTE-KUNTZ

said to be practical, acceptable, sensitive and fairly reliable in terms of intra- and inter-rater agreement. As a follow-up to the study, the issues raised during the interviews in relation to residents will be presented to the facility's social workers, administrators and other relevant personnel. These individuals will be asked to comment on the development of a protocol for selecting and preparing informants and allowing follow-up action. The issues raised in relation to the interview schedule itself will be discussed with the DCP Quality of Life Project Team. These discussions will lead to the revision of QUOLIS ~ with input from this multidisciplinary team. The revised QUOLIS ~ and the PROTOCOL for its use will be used in the development of a training session for interviewers and in future studies involving QUOLIS r A data bank will also be established starting with the pilot study data.

ACKNOWLEDGMENTS

The author wishes to thank Dr. Richard MacLachlan (thesis supervisor), Dr. Bruce McCreary (advisor and rater), Ms. Barbara Stanton (interviewer-rater), the family members and staff at Ongwanada who agreed to be interviewed and all those who assisted in the pilot study. As well, the financial support provided by the Office of the Dean and Vice Principal, Faculty of Medicine, Queen's University at Kingston, Ontario is acknowledged with gratitude. NOTE * Reproduced from the 'Quality of Life Interview' (Lehman, 1988).

REFERENCES Aaronson, N. K. and Calais de Silva, F.: 1987, 'Prospects for the future: quality of life evaluation in prostatic cancer protocols', Progress in Clinical and Biological Research 243B, 501--12. Aaronson, N. K., Calais de Silva, F., Yoshida, O., vanDam, F., Fossa, S., Miyakawa, M., Raghavan, D., Riedl, H., Robinson, M., and Worden, J.: 1986, 'Quality of life assessment in bladder cancer clinical trials: conceptual, methodological and practical issues', Progress in Clinical and Biological Research 221,149--70.

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ADHOD Services: 1985, August, Quality of Life Review System -- Draft Report. Oshawa: author. Blunden, R.: 1988, August, Quality of Life and People with Learning Difficulties: Issues in the Development of Services [Abstract]. Proceedings of the 8th World Congress of the International Association for the Scientific Study of Mental Deficiency. Borthwick-Duffy, S.: 1986, 'Quality of Life of mentally retarded people: Development of a model', Dissertation Abstract International (University Microfilms No. 8706979). Brown, R. I., Bayer, M. B. and Brown, M.: 1988, August, Quality of Life: A Challenge for Rehabilitation Agencies [Abstract]. Proceedings of the 8th World Congress of the International Association for the Scientific Study of Mental Deficiency. Developmental Services Act: 1985, (Government of Ontario, Toronto). Donner, A. and Eliasziw, M. 1987, 'Sample size requirements for reliability studies', Statistics in Medicine 6, 441--8. Duggan, S. O. and Scallion, L. M.: 1987, 'Nursing care of elderly persons throughout the cancer experience: A quality of life framework, Clinics in Geriatric Medicine 3(3), 517--31. Ferguson, G. A.: 1976, Statistical Analysis in Psychology and Education (4th ed.) (McGraw-Hill Book Company, Montreal). Fleiss, J. L.: 1986, The Design and Analysis of Clinical Experiments (John Wiley & Sons, Toronto). Fowlie, M. and Berkeley, J.: 1987, 'Quality of life -- A review of the literature', Family Practice 4(3), 226--34. Glatzer, W. and Mohr, H. M.: 1987, 'Part A 1. Quality of life: Concepts and measurements', Social Indicators Research 19, 15 --24. Goode, D. E.: 1988, December, Quality of Life for Persons with Disabilities: A Review and Synthesis of the Literature. (OHDS # 3DD0156/04) (Mental Retardation Institute, Valhalla, New York). Heal, L. W.: undated, A Cost-effectiveness Analysis of Services for Developmentally Disabled Adults: A Proposal for Research. Unpublished manuscript, University of Illinois, Dept. of Special Education, Urbana-Champalgn. Hersen, M. and Beliack, A. S. (Eds.): 1981, Behavioral Assessment: A Practical Handbook (2nd ed.) (Pergamon Press, Toronto). Hughes, J. and Segall, A.: 1988, August, Aspects of the Quality of Life of Former Residents of a Provincial Institution [Abstract]. Proceedings of the 8th World Congress of the International Association for the Scientific Study of Mental Deficiency. Keith, K., Schalock, R. and Hoffman, K.: 1986, October, Quality of Life: Measurement and Programmatic Implications. (Available from [Mid-Nebraska Mental Retardation Services, Hastings, NE D. Kidder, L. H.: 1981, Research Methods in Social Relations (4th ed.) (Holt-Saunders International Editions, New York). Landesman, S.: 1986, June, 'Quality of life and personal life satisfaction: Definition and measurement issues', Mental Retardation, 141--3. Larsen, R., Diener, E. and Emmons, R.: 1985, 'An evaluation of subjective well-being measures', Social Indicators Research 17, 1--17. Lehman, A. F.: 1988, October, Personal Communication. Lehman, A. F.: 1988, 'A quality of life interview for the chronically mentally ill', Evaluation and Program Planning 11, 51--62. Lehman, A. F.: 1983, 'The well-being of chronic mental patients', Archives of General Psychiatry 40, 369--73. Lehman, A. F., Ward, N. and Lima, L.: 1982, 'Chronic mental patients: the quality of life issue', American Journal of Psychiatry 139(10), 1271--6. Matthews, F. P. E.: 1988, August, Quality of Life Survey of People with a Mental

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Handicap: Views of People Resettled into the Community and in Hospital [Abstract]. Proceedings of the 8th World Congress of the International Association for the Scientific Study of Mental Deficiency. Matthews, D. E. and Farewell, V.: 1985, Using and Understanding Medical Statistics (Karger, London). MeCreary, B.: 1989, May, Personal Communication. McDowell, I. and Newell, C.: 1987, Measuring Health: A Guide to Rating Scales and Questionnaires (Oxford University Press, New York). McGinley, P.: 1988, A Study of the Quality of Life of Formerly Institutionalized People Now Living in Community Residences. (Available from [Woodlands Centre, Renmore, Galway, Ireland]). Michalos, A.: 1987, 'What makes people happy?', Levekarsforsning Konferanserapport (Proceedings of the Seminar Welfare Research), Norwegian Research Council for Science and Humanities, Oslo, Norway. O'Brien, J.: 1980, August, A Report on Quality of Life Experienced by People with Mental Retardation who rive in Central Manitoba. Unpublished manuscript. Parmenter, T. R., Martin, M., Findlay, S. and Gray, C.: 1988, August, Study of Changes in the Quality of Life of People with Severe Intellectual and Behavioural Disabilities Following a Curriculum-Based Intervention Program [Abstract]. Proceedings of the 8th World Congress of the International Association for the Scientific Study of Mental Deficiency. Rosen, M.: 1986, 'Quality of life for persons with mental retardation: A question of entitlement', Mental Retardation 24, 365--6. Rowitz L.: 1989, Editorial: 'Trends in Mental Retardation in the 1990's', Mental Retardation 27(1), iii--vi. Schalock, R. L. and Heal, L. W.: 1988, May 17, 'Research in quality of life: Current status and policy recommendations', in D. A. Goode (Ed.), The Proceedings of the National Conference on Quality of Life for Persons with Disabilities (pp. 88--108). (OHDS # 03DD0156/04) (pp. 88--108) (Mental Retardation Institute, Valhalla, New York). Schalock, R. L., Keith, K. D., Hoffman, K. and Karan, O. C.: 1989, 'Quality of life: Its measurement and use', Mental Retardation 27(1), 25--31. Shin, D. and Johnson, D.: 1978, 'Avowed happiness as an overall assessment of the quality of life', Social Indicators Research 5, 475--92. Simpson, C. J., Hyde, C. E. and Faragher, E. B.: 1989, 'The chronically mentally ill in community facilities: A study of quality of life', British Journal of Psychiatry 154, 77--82. Tantam, D.: 1988, Review article: 'Quality of rife and the chronically mentally ill', The International Journal of Social Psychiatry 34(4), 243--7. United Nations: 1983, World Programme of Action Concerning Disabled Persons (Minister of Supply and Services, Ottawa, Canada). Wenger, N. K.: 1986, 'Quality of life: Concept and approach to measurement', Advances in Cardiology 33, 122--30. Wood-Dauphinee, S. and Williams, J.: 1987, 'Reintegration to normal riving as a proxy to quality of life', Journal of Chronic Diseases 40(6), 491--9.

Department of Community Health and Epidemiology, Queen's Universityat Kingston, Kingston, Ont., Canada, K7L 3N6.