Table 1

 Studies categorised by measurement level and number of waves, diseases, psychological outcome variables, and statistical methods

StudyDisease*Outcome variables†Statistical methodQuality‡
*BRCA, breast cancer (BRCA1 and BRCA2); CF, cystic fibrosis; FAP, familial adenomatous polyposis; HBOC, hereditary breast and ovary cancer; HD, Huntington disease; HNPCC, hereditary non-polyposis colon cancer; LF, Li-Fraumeni cancer syndrome; MEN, multiple endocrine neoplasia; SCA, spinocerebellar ataxia.
†BDI, Beck Depression Inventory; BHS, Beck Hopelessness Scale; BIS, Body Image Scale; BSI-53, Brief Symptom Inventory; CBCL, Child Behaviour Checklist; CDI, Children’s Depression Inventory; CES-D, Centre for Epidemiological Studies, Depression; CWS, Cancer Worries Scale; GHQ, General Health Questionnaire; GWB, General Well Being scale; HADS, Hospital Anxiety and Depression Scale; HOS, Health Orientation Scale; HSCL, Hopkins Symptom Checklist; HVLT, Hopkins Verbal Learning Test; IAS, Illness Attitude Scale; IES, Impact of Event Scale; LOT, Life Orientation Test; MBSS, Miller Behavioural Style Scale; MMPI, Minnesota Multiphasic Personality Inventory; MOSS, Medical Outcomes Study Support Scale; MSI, Marital Satisfaction Inventory; ODCFS, Openness to Discuss Cancer in the Family Scale; POMS-SF, Profile of Mood States-Short Form; QNE, Quantified Neurological Examination; RADS, Reynolds Adolescent Depression Scale; RCBS, Rutter Child Behaviour Scale; RCMAS, Revised Children’s Manifest Anxiety Scale; SCL-90, Symptom Checklist-90; SCWT, Stroop Color and Word Test; SDS, Social Desirability Scale; SSQ, Social Support Questionnaire; STAI, State Trait Anxiety Inventory; UCL, Utrechtse Coping Lijst; WAIS-R, Wechsler Adult Intelligence Scale-Revised; WCST, Wisconsin Card Sorting Test.
‡ +, adequate; ~ less adequate.
Continuous variables, more than two waves
Codori (1997)60HDBDI, BHSGLMM+
Meiser (2002)82BRCAIES, BDI, STAI, MBSSGLMM+
Codori (2003)85FAPSCL-90, BDIGLMM+
Almqvist (2003)84HDSCL-90, BDI, GWBGLMM~
Timman (in press)1HDIES, BHSGLMM+
Wiggins (1992)51HDSCL-90, BDI, GWBRepeated measures MANOVA~
Tibben (1994)52HDIES, BHS, GHQRepeated measures MANOVA+
Campodonico (1996)54HDSCL-90, BDI, WAIS-R, HVLT, SCWT, WCST, QNERepeated measures ANOVA~
Tibben (1997)64HDIES, BHSRepeated measures MANOVA+
DudokdeWit (1998)65HD, FAP, HBOCIESRepeated measures MANOVA+
Aktan-Collan (2001)75HNPCCSTAI, IASRepeated measures ANOVA~
Lodder (2002)81BRCAIES, SCL-90, HADS, BISRepeated measures ANOVA+
Decruyenaere (2003)86HDSTAI, BDI, SCL-90, IES, HOS, MMPIRepeated measures ANOVA~
Tercyak (2001)79BRCASTAIRegression~
Schwartz (2002)83BRCAIES, HSCLRegression, ANOVA~
Decruyenaere (1996)56HDSTAI, BDI, MMPI, UCLPaired t-test, regression~
Dorval (2000)71BRCA-LFSCL-90, BSI-53Paired t-test, regression~
Friedman (1999)68BRCAIES, POMS-SFLogistic regression~
Oostrom (2003)87BRCAHADS, IES, CWS, ODCFSLogistic regression~
Horowitz (2001)76HDIES, BDIANCOVA~
Brandt (1989)50HDSTAI, SCL-90, BDI, BHSt-test for independent samples+
Lerman (1998)66BRCAIES, CES-DLogistic regression~
Michie (2001)78FAPIES, STAI, HADS, RCBS, HOS, LOTFriedman’s test for ordinal data~
Broadstock (2000)70HBOCIES, STAI, GHQ, CWSFriedman’s test for ordinal data~
Abe (1997)59SCASTAI, SDSKruskal-Wallis~
Quaid (1995)53HDSCL-90, BDI, BHS, MSIMann-Whitney U test~
Lawson (1996)57HDSCL-90, BDI, SSQ, adverse eventsNo longitudinal analyses performed~
Codori (1996)55FAPSCL-90, BDI, CDI, RADS, RCMAS, CBCLRepeated measures ANOVA+
Lodder (2001)77BRCAIES, HADSRepeated measures ANOVA+
Kirkwood (2002)80HDMMPIRepeated measures ANOVA+
Marteau (1997)62CFSTAI, GHQ, 12 dichotomous questionsRegression, logistic regression+
Croyle (1997)61BRCAIES, STAIRegression~
Decruyenaere (1999)67HDSTAI, BDI, MMPIRegression+
Smith (1999)69BRCAIES, STAIRegression~
Ritvo (2000)73BRCASTAI, CES-D, LOT, MOSSRegression~
Grosfeld (2000)72MENIES, STAI, SCL-90Paired t-test~
Lerman (1996)58BRCAIES, CES-DANOVA on difference scores, regression~
Wood (2000)74BRCAIES, HSCLWilcoxon’s sign rank/rank sum test+
Taylor (1997)63HDSCL-90, BDI, BHSFisher’s exact test~
Discrete variables, more than two waves
Aktan-Collan (2000)90HNPCC5-answer categories questionsRepeated measurements ANOVA, paired sample t-tests~