paywalled: Preferences for outcomes associated with decisions to undergo or forego genetic testing for Lynch syndrome

Preferences for outcomes associated with decisions to undergo or forego genetic testing for Lynch syndrome

Abstract

BACKGROUND:

Current guidelines recommend offering genetic testing for Lynch syndrome to individuals whose tumors suggest this condition and to relatives of affected individuals. Little is known, however, regarding how patients view the prospect of such testing. In addition, data on preferences (utilities) for the potential outcomes of testing decisions for use in cost-effectiveness analyses are lacking.

METHODS:

Time tradeoff utilities were elicited for 10 potential outcomes of Lynch syndrome testing decisions and 3 associated cancers from 70 participants, representing a range of knowledge about and experiences with Lynch syndrome.

RESULTS:

Highest mean utilities were assigned to scenarios in which only the assessor's sibling had Lynch-associated colorectal cancer (ranging from 0.669 ± 0.231 to 0.760 ± 0.220). Utilities assigned to scenarios in which the assessor had Lynch-associated colorectal cancer ranged from 0.605 ± 0.252 to 0.682 ± 0.246, whereas the lowest mean utilities were assigned to 2 of the general cancer states (0.601 ± 0.238 and 0.593 ± 0.272 for colorectal and ovarian cancer respectively). Only 43% of the sample assigned higher values to undergoing Lynch testing and receiving negative results versus foregoing Lynch testing, whereas 50% assigned higher values to undergoing rather than foregoing surgery to prevent a subsequent cancer.

CONCLUSIONS:

Genetic testing for Lynch syndrome, regardless of results, can have profound effects on quality of life; the utilities we collected can be used to incorporate these effects into cost-effectiveness analyses. Importantly, preferences for the potential outcomes of testing vary substantially, calling into question the extent to which patients would avail themselves of such testing if it were offered to them. Cancer 2012. © 2012 American Cancer Society

PLoS ONE: Citizen Participation in Patient Prioritization Policy Decisions: An Empirical and Experimental Study on Patients' Characteristics

PLoS ONE: Citizen Participation in Patient Prioritization Policy Decisions: An Empirical and Experimental Study on Patients' Characteristics

"The results of the survey questions showed that the vast majority of respondents agreed to prioritize patients with life threatening diseases and patients with acute diseases over all other patients. All criteria that described the patient's social engagement outside the family or socio-economic status (e.g., income, unemployment) were rejected as possible criteria for prioritization. A similar pattern could be observed in the discrete choice experiment: health status received the highest importance weight, whereas socio-economic status received a very low weight in terms of deciding which patient should be treated first. There is considerable agreement that those in need, i.e., the severely ill patient, should be treated first [1], [5]–[7]. Socio-economic status was not considered acceptable, but is a commonly practiced criterion in the daily routine of physicians [40], if not explicitly, at least implicitly so [41], [42]."


"In particular, medical criteria are highly accepted for prioritizing patients whereas socio-economic criteria and lifestyles are rejected. Especially the DCE showed that health status and quality of life were the only attributes that respondents would ultimately likely include in a decision-making process about which patients to prioritize for care. Policy makers in Germany have been very reluctant to even discuss the topic; indeed, all ministers of health over the last decade or so have refused to even talk about this issue. The present study shows that the “voice of the patient” – reliably captured through the methods used here – can be encapsulated in statistical models and thus introduced into policy-making settings [15]. The methods and findings illustrated in this research can be used to 1) increase citizen participation in the political discussion concerning this substantive policy topic, 2) define the scope of policy actions within the realm of the feasible, and 3) frame communications between policy-setting bodies and the population."

abstract: Follow-up of carriers of BRCA1 and BRCA2 variants of unknown significance: variant reclassification and surgical decisions.

Blogger's Note: while this article is specific to BRCA 1/2 it also would apply to other genetic syndromes eg. Lynch Syndrome, Peutz-Jeghers 
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Follow-up of carriers of BRCA1 and BRCA2 variants of unknown significance: variant reclassification and surgical decisions.:


Genet Med. 2011 Dec;13(12):998-1005

Abstract
PURPOSE:
Approximately 5-10% of patients who undergo genetic testing of BRCA1 and BRCA2 receive a variant of unknown significance (VUS) result. The ambiguous nature of a VUS may increase difficulty in patient understanding and decision making regarding risk reduction and surveillance options, including cancer risk-reducing surgeries. VUS reclassification to benign or deleterious may occur in time; however, clinical decisions may need to be made expeditiously, and some patients may pursue irreversible treatments before VUS reclassification.

METHODS:
We reviewed the surgical decisions of 107 women postdisclosure of a BRCA VUS result counseled at our institute between 1998 and 2009.

CONCLUSION:
Among women receiving a BRCA VUS result at our center, 11 of 107 (10.3%) pursued cancer risk-reducing mastectomy and 22 of 107 (20.6%) pursued cancer risk-reducing bilateral salpingo-oophorectomy. Reclassification of VUS occurred up to 9 years after testing, and 5 of 22 (22.7%) women followed up for 8 or more years continue to have a VUS result. We discuss considerations for providers of genetic services to discuss with patients who receive a VUS result.

open access: Shared Decision Making — The Pinnacle of Patient-Centered Care — NEJM

Nothing about me without me.

— Valerie Billingham, Through the Patient's Eyes, Salzburg Seminar Session 356, 1998

"Caring and compassion were once often the only “treatment” available to clinicians. Over time, advances in medical science have provided new options that, although often improving outcomes, have inadvertently distanced physicians from their patients. The result is a health care environment in which patients and their families are often excluded from important discussions and left feeling in the dark about how their problems are being managed and how to navigate the overwhelming array of diagnostic and treatment options available to them..........If we can view the health care experience through the patient's eyes, we will become more responsive to patients' needs and, thereby, better clinicians. Recognition of shared decision making as the pinnacle of patient-centered care is overdue. We will have succeeded in building a truly patient-centered health care system when an informed woman can decide whether to have a screening mammogram and an informed man can consider whether to have a screening prostate-specific–antigen test without their clinicians labeling the decision “wrong” on the basis of different values and preferences.

Do patients always get all of the information they need from their MD?

Do patients always get all of the information they need from their physician?

Posted by Gary Schwitzer in Health care/research ethics, Quality of care, Shared decision-making

"The following is a guest post by Harold DeMonaco, MS, a member of our editorial team, and Director of the Innovation Support Center at the Massachusetts General Hospital. A graduate of the Massachusetts College of Pharmacy and Allied Health Sciences he holds a bachelors degree in pharmacy and a masters degree in therapeutics. He has a keen interest in the innovation process in medicine and organizational behavior related to change....."

abstract: Involvement in decision-making about treatment and ovarian cancer survivor quality of life

Highlights

► Involvement in decision-making about ovarian cancer treatment is associated with better mental and emotional health related quality of life.
► Complementary and Alternative Medicine (CAM) use is associated with age, education, and stage of disease.
► Involvement in decision-making about (CAM) use is also associated with better quality of life.

The impact of patient and public involvement on UK NHS health care: a systematic review

Study selection UK studies from 1997 to 2009 which included service user involvement in NHS healthcare services.

Conclusion There is a need for significant development of the PPI (Patient Public Involvement) evidence base particularly around guidance for the reporting of user activity and impact. The evidence base needs to be significantly strengthened to ensure the full impact of involving service users in NHS healthcare services is fully understood.

The Courts, Futility, and the Ends of Medicine, January 11, 2012, White and Pope 307 (2): 151 — JAMA

Blogger's Note: full access requires subscription ($$$)

Doctor and Patient: Making Tough Medical Choices - NYTimes.com

P\S\L - News: CA-125 Monitoring Fails to Make Decisions Easier for Treatment of Ovarian Cancer: Presented at NCCN

Cancer Patients' Roles in Treatment Decisions: Do Characteristics of the Decision Influence Roles? — JCO (when no 'evidence' exists

Cancer Patients' Roles in Treatment Decisions: Do Characteristics of the Decision Influence Roles? JCO

Purpose
Patients with more active roles in decisions are more satisfied and may have better health outcomes. Younger and better educated patients have more active roles in decisions, but whether patients' roles in decisions differ by characteristics of the decision itself is unknown.

Conclusion
 Patients making decisions about treatments for which no evidence supports benefit and decisions about noncurative treatments reported more physician control, which suggests that patients may not want the responsibility of deciding on treatments that will not cure them. Better strategies for shared decision making may be needed when there is no evidence to support benefit of a treatment or when patients have terminal illnesses that cannot be cured.

free full access: Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review University

Note: gynecologic cancers included as one cancer (not broken down in chart)

table 1:    Preferred role versus actual or perceived role in treatment decision making (list of studies)


table 2:   Summary range of patients’ preferred role versus actual role by cancer type (click on 'read more')

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conclusions:

The descriptive nature of the studies included in this review makes it very difficult to calculate the exact difference between preferred and actual roles in decision making; hence, the authors report a summary range. Nevertheless, despite the use of a summary range, it is still quite clear that there is a limited concordance between preferred and actual roles in decision making. This limited concordance between patients’ preferred and actual roles assumed during decision making has indicated that clinicians need to raise their sensitivity regarding patient's participation in health care decisions. Given the variability and dynamic nature of patients’ role preferences, an individual assessment should be carried out during the entire course of treatment planning, particularly each time a critical treatment decision is about to be made. There is a need for clinicians to improve their communication skills to promote a patient's willingness to share his/her needs and desires. Innovative intervention studies that can improve matching of patient's preferred and actual roles during decision making are warranted as are studies that examine clinicians’ views on patient participation in decision making. Research on how patient- and clinician-related characteristics affect treatment decisions (e.g. age, gender, race/ethnicity, education) is also needed to determine those factors that affect the actualization of patients’ preferred role.

It's a choice to move forward: women's perceptions about treatment decision making in recurrent ovarian cancer

Abstract
OBJECTIVE: This research explores the treatment decision-making (TDM) experiences of women with recurrent ovarian cancer (ROC) with regard to treatment options; their understanding of risks and benefits of various treatment options; the decision-making role they want for themselves and for their oncologist; and the social context of the consultation as it pertains to the decision.
METHODS: We conducted semi-structured interviews with 26 women at the time of first recurrence. Through inductive data analysis key themes were identified.
RESULTS: Many women describe self-identifying the cancer recurrence fairly quickly due to new symptoms. Many feel that the goal for treating their recurrence is to control versus cure the cancer. They describe the subsequent process of diagnosis and TDM for ROC as quick and straightforward with all women accepting the oncologists' treatment recommendation. They feel that the type and number of treatment options are limited. They have a strong desire for physician continuity in their care. Participants feel that their doctor's recommendations as well as their previous experience with ovarian cancer are strong factors influencing their current TDM process.
CONCLUSIONS: Shared decision making is based on a simultaneous participation of both the physician and patient in TDM. When faced with ROC, women feel that their doctor's recommendation and their past experience with treatment and TDM are prominent factors influencing the current TDM process.

Attitudes Toward Information About Genetic Risk for Cognitive Impairment After Cancer Chemotherapy: Breast Cancer Survivors Compared With Healthy Controls

Conclusion
Results suggest lessened enthusiasm for genetic information that maintains or increases uncertainty about a specific course of action and highlight the importance of including clinically relevant groups in treatment decision-making research that employs hypothetical scenarios. Although women generally believe it is important to receive genetic information, they might benefit from assistance (eg, decision aid) in the difficult task of integrating information about survival and risk for adverse late effects from cancer treatment.

full free access: Hope and Noncurative Chemotherapies: Which Affects the Other? Journal of Clinical Oncology

Note: references ovarian cancer, factors involved in treatment related decision making "We still do not fully understand the concept of hope and its effects, both positive and negative..."