Exploring response shift in longitudinal data

OBJECTIVE: To evaluate recall bias in the thentest and to explore response shifts in chronically ill patients over time. METHODS: In a five-year study of 93 multiple sclerosis patients, kappa statistics examined recall bias in thentest scores. The thentest examined changes in internal standards. Longitudinal factor analysis investigated changes in conceptualization in evaluating quality of life (QOL). RESULTS: Standard analyses revealed deteriorating physical role performance but stability in other QOL indicators over time. Agreement between baseline indicators and thentest scores was lower for fatigue than for ambulation ( p<0.02), suggesting that the thentest captures recalibration response shift (17%) along with recall bias (22%). Patients changed internal standards for physical role limitations ( p<0.05) and fatigue ( p<0.0001), and reconceptualized QOL with respect to well-being and physical role. CONCLUSIONS: Underlying response shifts allowed patients to maintain homeostasis in reported QOL despite physical deterioration. These shifts interrelate but are not redundant. More variance in the thentest was explained by recall bias than by recalibration response shift.

[1]  Lublin Fd,et al.  Defining the clinical course of multiple sclerosis: results of an international survey. National Multiple Sclerosis Society (USA) Advisory Committee on Clinical Trials of New Agents in Multiple Sclerosis. , 1996 .

[2]  Robert T. Golembiewski,et al.  Measuring Change and Persistence in Human Affairs: Types of Change Generated by OD Designs , 1976 .

[3]  John Browne,et al.  Measuring response shift using the Schedule for Evaluation of Individual Quality of Life. , 2000 .

[4]  J. Koval,et al.  Interval estimation for Cohen's kappa as a measure of agreement. , 2000, Statistics in medicine.

[5]  G. Aimard,et al.  Course and prognosis of multiple sclerosis assessed by the computerized data processing of 349 patients. , 1980, Brain : a journal of neurology.

[6]  D A Bloch,et al.  Capturing the patient's view of change as a clinical outcome measure. , 1999, JAMA.

[7]  C. Schwartz,et al.  Teaching coping skills enhances quality of life more than peer support: results of a randomized trial with multiple sclerosis patients. , 1999, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[8]  Merlynn R. Bergen,et al.  Evaluation of a Medical Faculty Development Program , 1992 .

[9]  M. Eliasziw,et al.  Testing the homogeneity of kappa statistics. , 1996, Biometrics.

[10]  J. Kurtzke.  Rating neurologic impairment in multiple sclerosis , 1983, Neurology.

[11]  G. Albrecht,et al.  The disability paradox: high quality of life against all odds. , 1999, Social science & medicine.

[12]  H. Levene.  Robust tests for equality of variances , 1961 .

[13]  J. Graham,et al.  Agreement Between Retrospective Accounts of Substance Use and Earlier Reported Substance Use , 1985 .

[14]  R. Sorelle.  US Department of Health and Human Services gives states wider latitude in choosing services to be covered by Medicaid. , 2001, Circulation.

[15]  P Tugwell,et al.  The MACTAR Patient Preference Disability Questionnaire--an individualized functional priority approach for assessing improvement in physical disability in clinical trials in rheumatoid arthritis. , 1987, The Journal of rheumatology.

[16]  Neal Schmitt,et al.  Comparison of Three Techniques to Assess Group-Level Beta and Gamma Change , 1984 .

[17]  M. King.  Adaptation to changing health: Response shift in quality of life research , 2002, Quality of Life Research.

[18]  D. Locker,et al.  Quality of life: a dynamic construct. , 1997, Social science & medicine.

[19]  W. Levinson,et al.  Retrospective Versus Actual Pre-Course Self-Assessments , 1990 .

[20]  George S. Howard,et al.  Response-shift bias: A source of contamination of self-report measures. , 1979 .

[21]  G. Howard,et al.  Internal Invalidity in Studies Employing Self-Report Instruments: A Suggested Remedy. , 1979 .

[22]  Response shift in individualized quality of life in patients with advanced prostate cancer , 2002 .

[23]  J. Bach,et al.  Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. , 1994, Archives of physical medicine and rehabilitation.

[24]  S. Folkman,et al.  Response shift: A coping perspective. , 2000 .

[25]  M. Sprangers,et al.  Integrating response shift into health-related quality of life research: a theoretical model. , 1999, Social science & medicine.

[26]  B. Belza,et al.  Correlates of Fatigue in Older Adults with Rheumatoid Arthritis , 1993, Nursing research.

[27]  C. Bonferroni.  Il calcolo delle assicurazioni su gruppi di teste , 1935 .

[28]  M. Litwin,et al.  Accuracy of recall in health-related quality-of-life assessment among men treated for prostate cancer. , 1999, Journal of Clinical Oncology.

[29]  George S. Howard,et al.  The Feasibility of Informed Pretests in Attenuating Response-Shift Bias , 1979 .

[30]  J. Hoogstraten.  Influence of Objective Measures on Self-Reports in a Retrospective Pretest-Posttest Design , 1985 .

[31]  M. Sprangers,et al.  Innovations and dilemmas in psychosocial oncology. Contributions from the 10th conference of the European Society for Psychosocial Oncology. , 1999, Acta oncologica.

[32]  C. Ryff.  Happiness is everything, or is it? Explorations on the meaning of psychological well-being. , 1989 .

[33]  W. L. Benedict,et al.  Multiple Sclerosis , 2007, Journal - Michigan State Medical Society.

[34]  S. Parker,et al.  THE INTERPRETATION OF CHANGE IN VERBAL REPORTS: IMPLICATIONS FOR HEALTH PSYCHOLOGY , 1996 .

[35]  M. Sprangers,et al.  Revealing response shift in longitudinal research on fatigue--the use of the thentest approach. , 1999, Acta oncologica.

[36]  C. Schwartz,et al.  Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift , 2004, Health and quality of life outcomes.

[37]  Johan Hoogstraten,et al.  Pretesting effects in retrospective pretest posttest designs. , 1989 .

[38]  M H Liang,et al.  Discrepancies between self-reported and observed physical function in the elderly: the influence of response shift and other factors. , 1999, Social science & medicine.

[39]  F. V. van Dam,et al.  Underreporting by cancer patients: the case of response-shift. , 1991, Social science & medicine.

[40]  E. Guadagnoli,et al.  How consistent is patient-reported pre-admission health status when collected during and after hospital stay? , 1995, Medical care.

[41]  B. Weinshenker,et al.  Epidemiology of multiple sclerosis. , 1996, Neurologic clinics.

[42]  C. Schwartz,et al.  Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. , 1999, Social science & medicine.

[43]  J R Morris,et al.  The Sickness Impact Profile: Conceptual Formulation and Methodology for the Development of a Health Status Measure , 1976, International journal of health services : planning, administration, evaluation.

[44]  C. Schwartz,et al.  Measuring self-efficacy in people with multiple sclerosis: a validation study. , 1996, Archives of physical medicine and rehabilitation.

[45]  Stephen M. Rao,et al.  Cognitive dysfunction in multiple sclerosis. , 1991, Neurology.

[46]  Scott E. Maxwell,et al.  Internal Invalidity in Pretest-Posttest Self-Report Evaluations and a Re-evaluation of Retrospective Pretests , 1979 .

[47]  D. Dillman.  Mail and telephone surveys : the total design method , 1979 .

[48]  Laura L. Carstensen,et al.  Emotion in the Second Half of Life , 1998 .