Mary C. Politi

Assessing the Quality of Decision Support Technologies Using the International Patient Decision Aid Standards instrument (IPDASi)

Objectives To describe the development, validation and inter-rater reliability of an instrument to measure the quality of patient decision support technologies (decision aids). Design Scale development study, involving construct, item and scale development, validation and reliability testing. Setting There has been increasing use of decision support technologies – adjuncts to the discussions clinicians have with patients about difficult decisions. A global interest in developing these interventions exists among both for-profit and not-for-profit organisations. It is therefore essential to have internationally accepted standards to assess the quality of their development, process, content, potential bias and method of field testing and evaluation. Methods Scale development study, involving construct, item and scale development, validation and reliability testing. Participants Twenty-five researcher-members of the International Patient Decision Aid Standards Collaboration worked together to develop the instrument (IPDASi). In the fourth Stage (reliability study), eight raters assessed thirty randomly selected decision support technologies. Results IPDASi measures quality in 10 dimensions, using 47 items, and provides an overall quality score (scaled from 0 to 100) for each intervention. Overall IPDASi scores ranged from 33 to 82 across the decision support technologies sampled (n = 30), enabling discrimination. The inter-rater intraclass correlation for the overall quality score was 0.80. Correlations of dimension scores with the overall score were all positive (0.31 to 0.68). Cronbachs alpha values for the 8 raters ranged from 0.72 to 0.93. Cronbachs alphas based on the dimension means ranged from 0.50 to 0.81, indicating that the dimensions, although well correlated, measure different aspects of decision support technology quality. A short version (19 items) was also developed that had very similar mean scores to IPDASi and high correlation between short score and overall score 0.87 (CI 0.79 to 0.92). Conclusions This work demonstrates that IPDASi has the ability to assess the quality of decision support technologies. The existing IPDASi provides an assessment of the quality of a DSTs components and will be used as a tool to provide formative advice to DSTs developers and summative assessments for those who want to compare their tools against an existing benchmark.

The effects of age and emotional acceptance on distress among breast cancer patients

ObjectivesThis study examined whether emotional acceptance moderates the relationship between age and distress among breast cancer patients near the end of the first year after diagnosis.Materials and methodThe Emotional acceptance scale and the Profile of Mood States scale were completed by 79 women with Stage II or III breast cancer.ResultsResults showed that younger women reported greater distress than older women. Those who were less accepting of their emotions also reported greater distress than those who were more accepting, regardless of age.DiscussionThese results suggest that emotional acceptance may be beneficial for both younger and older women facing breast cancer. Additional implications of these findings are discussed.

Patient–Provider Communication About Sexual Health Among Unmarried Middle-aged and Older Women

BACKGROUNDAlthough past studies have highlighted the importance of patient–provider communication about sexual health and intimate relationships (SHIR), much of the research has focused on young women’s or married women’s experiences when discussing SHIR with their providers.OBJECTIVETo describe experiences of unmarried, middle-aged and older women in communicating about SHIR with their health care providers.DESIGN AND PARTICIPANTSQualitative interviews were conducted with 40 unmarried women aged 40–75 years. We compared the responses of 19 sexual minority (lesbian and bisexual) women and 21 heterosexual women.RESULTSWomen varied in their definitions of intimate relationships. Not all women thought providers should ask about SHIR unless questions were directly related to a health problem, and most were not satisfied with questions about SHIR on medical intake forms. However, the themes women considered to be important in communication about SHIR were remarkably consistent across subgroups (e.g. previously married or never married; sexual minority or heterosexual). Sexual minority women were more hesitant to share information about SHIR because they had had prior negative experiences when disclosing their sexual orientation or perceived that clinicians were not informed about relevant issues.CONCLUSIONSSome women felt that providers should ask about SHIR only if questions relate to an associated health problem (e.g. sexually transmitted infection). When providers do ask questions about SHIR, they should do so in ways that can be answered by all women regardless of partnering status, and follow questions with non-judgmental discussions.

Patient-provider communication and cancer screening among unmarried women.

OBJECTIVES Unmarried women are less likely than married women to receive recommended cancer screenings. Patient-provider communication is a consistent predictor of cancer screening among women. The purpose of this study was to investigate the relationship between patient and provider communication, barriers to cancer screening, and on-schedule breast and cervical cancer screening (BCCS) among unmarried women. METHODS Data were from the Cancer Screening Project for Women, a 2003-2005 survey examining cancer screening practices. We computed polytomous logistic regression models to examine the relationship between communication (communication about tests, communication about sexual and intimate relationships), barriers to screening, and on-schedule BCCS among unmarried women. RESULTS A total of 630 women were enrolled, and 605 women completed the baseline questionnaire. Overall, more than 60% reported on-schedule BCCS. More than half reported that their providers communicated about BCCS most or all of the time. Fewer than half communicated about sexual history and intimate relationships. Women who reported that their providers communicated about screening tests and their sexual and intimate relationships were more likely to be on-schedule for BCCS. CONCLUSION Patient-provider communication about multiple topics may encourage women to remain on-schedule for their recommended cancer screenings. Longitudinal research should be conducted to examine whether communication predicts BCCS, and to examine how patient and provider characteristics may influence communication in order to promote adherence to screening guidelines for unmarried women. PRACTICE IMPLICATIONS Comprehensive communication that goes beyond information about screening tests may impact adherence to cancer screening guidelines.

Advance Care Planning Decisions of Women with Cancer: Provider Recognition and Stability of Choices

Our prior research found that 43% of women with cancer relied on more than one person for advance care planning (ACP) and support. We conducted this follow-up study to address the stability of patient choices around ACP and providers’ knowledge of patients’ named supports. Living participants from the original survey were recontacted and asked to participate in this study. Of the original 215 participants, 113 (66%) participated. The median time between surveys was 23 months. At resurvey, 33 (26%) patients did not name the same person to all three roles. Controlling for age, race, partner status, tumor type, and remission status, naming one person for all three roles was associated with higher concordance at follow-up for primary support (PS) and health care proxy (HCP). Comparing patients’ and providers’ responses (N = 162), concordance was 71% for emergency contact (EC), 60% for PS, but only 51% for HCP. In this follow-up study, a smaller percentage of women named more than one person to the roles of EC, PS, and HCP compared to the original survey. Of concern, concordance between patient and provider was low, particularly for HCP. This was notable especially when responses changed over the interval time, and when ACP and PS roles were split between multiple people. Understanding the network of people who serve ACP and support roles may be important as we seek to improve the process of ACP and surrogate decision making.