Evaluation of a Shared Decision Making Program for Women Suspected to Have a Genetic Predisposition to Breast Cancer

Stalmeier, Peep F. M.; Unić, Ivana; Verhoef, Lia C.G.; Daal, W.A.J. van

doi:10.1177/0272989x9901900302

Cited by 38 publications

(26 citation statements)

References 42 publications

(16 reference statements)

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“…We identified 43 papers [39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55][56] that investigated cognitive, affective, and/or behavioral outcomes of genetic counseling, 18 of which were excluded [39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55][56]. The lack of prospective data was the most common reason for exclusion [39-41, 44, 49, 51, 52].…”

Section: Resultsmentioning

confidence: 99%

Psychological Impact of Genetic Counseling for Familial Cancer: A Systematic Review and Meta-Analysis

et al. 2006

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Section: Resultsmentioning

confidence: 99%

Psychological Impact of Genetic Counseling for Familial Cancer: A Systematic Review and Meta-Analysis

et al. 2006

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“…Because clinicians often fail to identify those who are distressed [43][44][45], the use of a standardized screening questionnaire may be useful and efficient. Pre-as well as post-surgery professional psychosocial support can help individuals in making a well-balanced decision about undergoing surgery, facilitate the adaptation to the operation, and prevent feelings of regret [46]. The majority of psychosocial problems can be alleviated effectively with one or more additional contacts with a social worker or psychologist [47,48].…”

Section: Discussionmentioning

confidence: 99%

Psychological distress and use of psychosocial support in familial adenomatous polyposis

et al. 2009

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Objective: Familial adenomatous polyposis (FAP) is characterized by multiple adenomas in the colorectum with a high risk to develop colorectal cancer. It is unclear whether individuals at risk of FAP experience distress due to this potentially life-threatening disease. This nationwide study assessed: (1) the prevalence of psychological distress; and (2) the need for and use of specialized professional psychosocial support.Methods: In this cross-sectional study, all individuals from families at high risk for FAP registered at the Netherlands Foundation for the Detection of Hereditary Tumours were invited to complete a questionnaire assessing, among other issues, generalized, cancer-specific and FAP-specific distress.Results: In total, 525 individuals completed the questionnaire. Approximately 20% of the respondents had moderate to severe levels of FAP-specific distress. Levels of generalized distress were comparable to the general Dutch population. Significantly more individuals with a FAP diagnosis had frequent cancer worries than those at risk of FAP or non-carriers (p 5 0.02). Distress levels were more strongly associated with psychosocial variables (e.g. perceived cancer risk), than with sociodemographic or clinical variables. Up to 43% of the variance in distress could be explained by all variables combined. Of those moderately to severely distressed, 26% had received specialized professional psychosocial support, while 30% of those did not receive the support they wanted.Conclusions: A substantial minority of individuals reported moderate to severe distress levels associated with FAP. However, only one-third of those received specialized professional psychosocial support. We recommend the use of a screening questionnaire to identify individuals in need of such support.

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“…Previously, we found [27] that a negative emotional reaction to a similar video and brochure was associated with a more troublesome resolution of decision process. We expected that lower scores on Decision Evaluation scales would be related to a negative emotional reaction towards the brochure and video.…”

Section: Validitymentioning

confidence: 86%

The decision evaluation scales

Stalmeier

Roosmalen²,

Verhoef³

et al. 2005

Patient Education and Counseling

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There are several instruments to assess how patients evaluate their medical treatment choice. These are used to evaluate decision aids. Our objective is to investigate which psychological factors play a role when patients evaluate their medical treatment choices. A pool of 36 items was constructed, covering concepts such as uncertainty about and satisfaction with the decision, informed choice, effective decision making, responsibility for the decision, perceived riskiness of the choice, and social support regarding the decision. This pool was presented to patients at high risk for breast and ovarian cancer, awaiting a genetic test result, and facing the choice between prophylactic surgery or screening. Additional measures were assessed for validation purposes. Factor and Rasch analyses were used for factor and item selection. Construct validity of emerging scales was assessed by relating them with the additional measures. Three factors summarised the psychological factors concerning decision evaluation: Satisfaction-Uncertainty, Informed Choice, and Decision Control. Reliabilities (Cronbach's a) of the three scales were 0.79, 0.85, and 0.75, respectively. Construct validity hypotheses were confirmed. The first two scales were similar to previously developed scales. Of these three scales, the Decision Control scale correlated most strongly with the well-being measures, was associated with partner's agreement and physician's preferences as perceived by patients, and with a negative emotional reaction to the information material. In conclusion, the Decision Control scale is a new scale to evaluate decision aids, and it appears to be rooted in health psychological theories.

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Evaluation of a Shared Decision Making Program for Women Suspected to Have a Genetic Predisposition to Breast Cancer

Cited by 38 publications

References 42 publications

Psychological Impact of Genetic Counseling for Familial Cancer: A Systematic Review and Meta-Analysis

Psychological Impact of Genetic Counseling for Familial Cancer: A Systematic Review and Meta-Analysis

Psychological distress and use of psychosocial support in familial adenomatous polyposis

The decision evaluation scales

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