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Open Access Research article

Development and preliminary testing of the psychosocial adjustment to hereditary diseases scale

Kathy E Watkins12, Christine Y Way23*, Deborah M Gregory24, Holly M LeDrew5, Valerie C Ludlow2, Mary Jane Esplen6, Jeffrey J Dowden7, Janet E Cox8, G William N Fitzgerald8 and Patrick S Parfrey2

Author Affiliations

1 Centre for Nursing Studies, Eastern Regional Integrated Health Authority, St. John’s, NL, Canada

2 Clinical Epidemiology Unit, Faculty of Medicine, Memorial University of Newfoundland, St. John’s, NL, Canada

3 School of Nursing, Memorial University of Newfoundland, 300 Prince Philip Drive, St. John’s, NL A1B 3V6, Canada

4 Eastern Regional Integrated Health Authority, St. John’s, NL, Canada

5 Western Regional School of Nursing, Western Regional Integrated Health Authority, Corner Brook, NL, Canada

6 Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, ON, Canada

7 Newfoundland and Labrador Centre for Health Information, St. John’s, NL, Canada

8 Division of Surgery, Charles S. Curtis Memorial Hospital, St. Anthony, NL, Canada

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BMC Psychology 2013, 1:7  doi:10.1186/2050-7283-1-7

Published: 30 April 2013

Abstract

Background

The presence of Lynch syndrome (LS) can bring a lifetime of uncertainty to an entire family as members adjust to living with a high lifetime cancer risk. The research base on how individuals and families adjust to genetic-linked diseases following predictive genetic testing has increased our understanding of short-term impacts but gaps continue to exist in knowledge of important factors that facilitate or impede long-term adjustment. The failure of existing scales to detect psychosocial adjustment challenges in this population has led researchers to question the adequate sensitivity of these instruments. Furthermore, we have limited insight into the role of the family in promoting adjustment.

Methods

The purpose of this study was to develop and initially validate the Psychosocial Adjustment to Hereditary Diseases (PAHD) scale. This scale consists of two subscales, the Burden of Knowing (BK) and Family Connectedness (FC). Items for the two subscales were generated from a qualitative data base and tested in a sample of 243 participants from families with LS.

Results

The Multitrait/Multi-Item Analysis Program-Revised (MAP-R) was used to evaluate the psychometric properties of the PAHD. The findings support the convergent and discriminant validity of the subscales. Construct validity was confirmed by factor analysis and Cronbach’s alpha supported a strong internal consistency for BK (0.83) and FC (0.84).

Conclusion

Preliminary testing suggests that the PAHD is a psychometrically sound scale capable of assessing psychosocial adjustment. We conclude that the PAHD may be a valuable monitoring tool to identify individuals and families who may require therapeutic interventions.

Keywords:
Lynch syndrome; Hereditary diseases; Genetic testing; Psychometric testing