Assessment
Development and validation of the Psychological Adaptation Scale (PAS): Use in six studies of adaptation to a health condition or risk

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Abstract

Objective

We introduce The Psychological Adaptation Scale (PAS) for assessing adaptation to a chronic condition or risk and present validity data from six studies of genetic conditions.

Methods

Informed by theory, we identified four domains of adaptation: effective coping, self-esteem, social integration, and spiritual/existential meaning. Items were selected from the PROMIS “positive illness impact” item bank and adapted from the Rosenberg self-esteem scale to create a 20-item scale. Each domain included five items, with four sub-scale scores. Data from studies of six populations: adults affected with or at risk for genetic conditions (N = 3) and caregivers of children with genetic conditions (N = 3) were analyzed using confirmatory factor analyses (CFA).

Results

CFA suggested that all but five posited items converge on the domains as designed. Invariance of the PAS amongst the studies further suggested it is a valid and reliable tool to facilitate comparisons of adaptation across conditions.

Conclusion

Use of the PAS will standardize assessments of adaptation and foster understanding of the relationships among related health outcomes, such as quality of life and psychological well-being.

Practice implications

Clinical interventions can be designed based on PAS data to enhance dimensions of psychological adaptation to a chronic health condition or risk.

Introduction

The diagnosis of a genetic condition, or the identification of an increased risk for a disease, poses a threat to one's health that leads to stress. How successfully an individual manages that stress determines how well they adapt to the condition over time. One goal of genetic counseling is to facilitate adaptation to a genetic condition or risk [1]. Yet research to identify client needs related to adaptation has been thwarted by a lack of consistency in how the concept is defined and measured [2]. This problem has resulted in limited studies into factors associated with adaptation, particularly those that may be amenable to clinical intervention. The lack of standardized measures of adaptation has precluded meta-analysis of the studies that have been done. Similarly, the association between adaptation and related health outcomes, such as quality of life and psychological well-being has been relatively unexamined.

Insight into factors that contribute to adaptation can be gained from models of chronic illness. Lazarus and Folkman's Transactional Model of Stress and Coping outlines the relationship of primary and secondary stress appraisals to coping strategies, and ultimately adaptation [3]. Appraisals refer to an assessment of the degree of stress and ways to control or manage it. Examples include perceived risk, illness perceptions, perceived personal control, self-efficacy, and past coping success. Coping that stems from such appraisals may be more or less effective in fostering adaptation [4], [5]. When successful, adaptation can be viewed as a positive outcome of responding to a health threat. Similarly, Taylor [6] defined three critical components in the Cognitive Theory of Adaptation: meaning making, mastery, and self-esteem. A number of studies of adaptation to common and chronic illness have generated empirical evidence to support these theories [7], [8], [9]. However, the conceptualization and assessment of adaptation among these studies have varied significantly.

We previously defined adaptation as the dynamic and multi-dimensional process of coming to terms with the implications of a health threat and the outcomes of that process [2]. Other names for this construct that appear in the literature include adjustment and acceptance, measured using a variety of scales that assess related but distinct constructs including psychological well-being, physical functioning, anxiety and depression [2]. For example, Wakefield and colleagues review of eight studies of caregiver “adjustment” to a pediatric cancer diagnosis yielded scales measuring at least eight distinct outcomes [10]. They were: symptoms of post-traumatic stress disorder (Impact of Events Scale and Reaction Index), general health (General Health Questionnaire), family impact (Important Family Events Scale), resilience (SSERQ), anxiety (STAI), psychological distress (GHQ), family life (Family Life Scale) and family needs (Family Needs Survey). The array of scales used precludes a meta-analysis of adaptation/adjustment and exemplifies the lack of consensus in distinguishing and assessing adaptation. We argue the need for a more explicit measure of the construct of adaptation enabling across-study comparisons.

We introduce the Psychological Adaptation Scale (PAS), which measures adaptation to a chronic condition or disease risk. Our objective in developing the PAS was to create a succinct scale grounded in existing theory to assess the cognitive and emotional outcomes of coping. To that end, we strived to select key components of adaptation, thereby simplifying a complex outcome. Although we recognize adaptation as a dynamic and multi-dimensional construct that occurs over time, the PAS was designed to capture the extent of adaptation at a single time point. We developed the PAS with four sub-scales representing each of the domains and the intention for the four sub-scales to represent an overall score of adaptation. Important related outcomes of living with the stress of a health threat include: quality of life, psychological well-being and depressive symptoms. By differentiating adaptation from these outcome measures and assessing how they are related, we hope to clarify prior theoretical and empirical work on adaptation and to eventually improve clinical outcomes.

The purpose of this study is to confirm the factor structure and reliability of the PAS, including invariance of the factor structure across six diverse populations including individuals with disease or at risk for disease and caregivers of children with a condition.

Section snippets

Methods

Both the Transactional Theory of Stress and Coping [3] and the Cognitive Theory of Adaptation [6] were used to guide the selection of four domains of adaptation included in the PAS. The domains are coping efficacy, self-esteem, spiritual/existential well-being, and social integration. Coping appears as a key mediator of adaptation in both theories and informed our choice of coping efficacy as the first domain. Taylor's theory further elucidates a key role for self-esteem, “meaning making” that

Results

The original hypothesized model for adaptation as represented in Fig. 3 was not supported by the data for any of the groups. In particular, low communalities and other model diagnostics suggested that Q5, Q11, Q12, Q19 and Q20 should be reviewed for exclusion from the model. Review of these questions in light of the CFA diagnostics, suggested that Q19 and Q20 were qualitatively slightly different in content than the other items in the Spiritual Well-Being subscale (Q16, Q17 and Q18). Similarly,

Discussion

The use of confirmatory factor analysis meets a high standard for validation of a new measure. Our analysis was strengthened by the use of six unique studies of sizable cohorts. The items were correlated to the domains that they were intended to, with the exception of five items that did not contribute to the overall measure. Upon close inspection, these items did vary slightly in content from the others. The PAS can be used with the five items removed without jeopardizing its validity. Our

Acknowledgments

This research was funded by the National Human Genome Research Institute Intramural Research Program, National Institutes of Health. We would like to thank Sara Rosenbloom and Sophia Garcia from the PROMIS consortium for their help in assessing psychometric performance of the items.

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