ARE WE ALL OF ONE MIND - CLINICIAN AND PATIENTS OPINIONS REGARDING THE DEVELOPMENT OF A SERVICE PROTOCOL FOR PREDICTIVE TESTING FOR HUNTINGTON-DISEASE

被引:17
作者
COPLEY, TT
WIGGINS, S
DUFRASNE, S
BLOCH, M
ADAM, S
MCKELLIN, W
HAYDEN, MR
IVES, E
WELCH, JP
FULLER, A
MILLER, S
ANDERMANN, E
ROY, M
MCLEOD, P
HUNTER, A
MESCHINO, W
WHELAN, D
EISENBERG, D
SOLTAN, H
KANE, J
GREENBERG, CR
KNIGHT, J
THOMPSON, LP
SHOKEIR, MHK
BAMFORTH, S
GROVER, S
SUCHOWERSKY, O
KLIMEK, M
机构
[1] UNIV BRITISH COLUMBIA,DEPT MED GENET,VANCOUVER,BC V5K 2H5,CANADA
[2] UNIV BRITISH COLUMBIA,DEPT ANTHROPOL & SOCIOL,VANCOUVER,BC V6T 2B2,CANADA
[3] MCGILL UNIV,DEPT HUMAN GENET,MONTREAL,PQ,CANADA
来源
AMERICAN JOURNAL OF MEDICAL GENETICS | 1995年 / 58卷 / 01期
关键词
HUNTINGTON DISEASE; PREDICTIVE TESTING; GENETIC SERVICES;
D O I
10.1002/ajmg.1320580113
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
There are currently different research programs in place to assess the effects of predictive testing for a few late-onset disorders, including Huntington disease (HD) and familial cancers. Prior to providing predictive testing as a service, we sought the views of both the patients and the clinicians as to the importance and value of different items in a research protocol for HD. We mailed questionnaires to 41 clinicians and 351 at-risk patients who had participated in the research protocol, to solicit their opinions on the relative importance of various components of the HD predictive testing research protocol. Completed questionnaires were received from 256 patients (73%) and 33 clinicians (80%). Most participants (96%) were satisfied with the program, and <3% of persons receiving a modification of risk felt that predictive testing had impaired their quality of life. While there was consensus on the importance of most components of the protocol, significantly more clinicians than patients (97% vs. 72%; P = 0.02) felt it was essential to keep written material about HD as part of a service protocol. More patients than clinicians (83% vs. 27%) considered it essential to have 24-hr contact numbers following disclosure of test results (P < 0.0001). Patients also felt more strongly about the importance of counseling about technical aspects of predictive testing (84% vs. 77%; P < 0.02), and about having a support person attend counselling sessions with the patient (62% vs. 48%; P = 0.04). Nearly 25% of participants indicated that they would not want their general practioner routinely involved in the predictive testing program. These findings have influenced the development of our service protocol, and they underscore the importance of involving both providers and consumers of predictive testing in the development of a service protocol for genetic testing. (C) 1995 Wiley-Liss, Inc.
引用
收藏
页码:59 / 69
页数:11
相关论文
共 17 条
  • [1] ATTITUDES TOWARD DIRECT PREDICTIVE TESTING FOR THE HUNTINGTON DISEASE GENE - RELEVANCE FOR OTHER ADULT-ONSET DISORDERS
    BABUL, R
    ADAM, S
    KREMER, B
    DUFRASNE, S
    WIGGINS, S
    HUGGINS, M
    THEILMANN, J
    BLOCH, M
    HAYDEN, MR
    [J]. JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 1993, 270 (19): : 2321 - 2325
  • [2] BENJAMIN CM, 1994, AM J HUM GENET, V55, P606
  • [3] PRESYMPTOMATIC DIAGNOSIS OF DELAYED-ONSET DISEASE WITH LINKED DNA MARKERS - THE EXPERIENCE IN HUNTINGTONS-DISEASE
    BRANDT, J
    QUAID, KA
    FOLSTEIN, SE
    GARBER, P
    MAESTRI, NE
    ABBOTT, MH
    SLAVNEY, PR
    FRANZ, ML
    KASCH, L
    KAZAZIAN, HH
    [J]. JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 1989, 261 (21): : 3108 - 3114
  • [4] PREDICTIVE TESTING FOR HUNTINGTON DISEASE .1. DESCRIPTION OF A PILOT PROJECT IN BRITISH-COLUMBIA
    FOX, S
    BLOCH, M
    FAHY, M
    HAYDEN, MR
    [J]. AMERICAN JOURNAL OF MEDICAL GENETICS, 1989, 32 (02): : 211 - 216
  • [5] A POLYMORPHIC DNA MARKER GENETICALLY LINKED TO HUNTINGTONS-DISEASE
    GUSELLA, JF
    WEXLER, NS
    CONNEALLY, PM
    NAYLOR, SL
    ANDERSON, MA
    TANZI, RE
    WATKINS, PC
    OTTINA, K
    WALLACE, MR
    SAKAGUCHI, AY
    YOUNG, AB
    SHOULSON, I
    BONILLA, E
    MARTIN, JB
    [J]. NATURE, 1983, 306 (5940) : 234 - 238
  • [6] Harper PS, 1991, HUNTINGTONS DISEASE
  • [7] Hayden MR., 1981, HUNTINGTONS CHOREA, P45
  • [8] HAYDEN MR, 1985, CLIN GENET, V27, P117
  • [9] INGLEHART JK, 1990, NEW ENGL J MED, V322, P562
  • [10] ATTITUDES OF PERSONS AT RISK FOR HUNTINGTON DISEASE TOWARD PREDICTIVE TESTING
    KESSLER, S
    FIELD, T
    WORTH, L
    MOSBARGER, H
    [J]. AMERICAN JOURNAL OF MEDICAL GENETICS, 1987, 26 (02): : 259 - 270