The impact of vestibular schwannoma and its management on employment.

BACKGROUND: Employment is an important factor in quality of life. For vestibular schwannoma (VS) patients, employment is not self-evident, because of the sequelae of the disease or its treatment and their effects on daily life. OBJECTIVES: This study assessed employment status, sick leave (absenteeism) and being less productive at work (presenteeism) in the long-term follow-up of VS patients, and evaluated the impact of treatment strategy (active surveillance, surgery or radiotherapy). METHODS: A cross-sectional survey study was performed in a tertiary university hospital in the Netherlands. Patients completed the iMTA-post productivity questionnaire (iPCQ). Employment status was compared to that of the general Dutch population. Employment, absenteeism and presenteeism were compared between patients under active surveillance, patients after radiotherapy and post-surgical patients. RESULT: In total 239 patients participated, of which 67% were employed at the time of the study. Only 14% had a disability pension, which was comparable to the age-matched general Dutch population. The proportion of patients with absenteeism was 8%, resulting in a 4% reduction of working hours. Presenteeism was reported by 14% of patients, resulting in a 2% reduction of working hours. The median number of working hours per week was 36, and since the diagnosis, these hours had been reduced by 6%. There were no significant differences between treatment modalities. CONCLUSION: On average, long-term employment status and working hours of VS patients are comparable to the age-matched general population. Treatment strategies do not seem to differentially impact on long-term employment of VS patients.

How doctors actually (do not) involve families in decisions to continue or discontinue life-sustaining treatment in neonatal, pediatric, and adult intensive care: A qualitative study.

BACKGROUND: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based approach. AIM: To explore how doctors involve families in the decision-making process regarding life-sustaining treatment on the neonatal, pediatric, and adult intensive care. DESIGN: Exploratory inductive thematic analysis of 101 audio-recorded conversations. SETTING/PARTICIPANTS: One hundred four family members (61% female, 39% male) and 71 doctors (60% female, 40% male) of 36 patients (53% female, 47% male) from the neonatal, pediatric, and adult intensive care of a large university medical center participated. RESULTS: We identified eight relevant and distinct communicative behaviors. Doctors' sequential communicative behaviors either reflected consistent approaches-a shared approach or a physician-driven approach-or reflected vacillating between both approaches. Doctors more often displayed a physician-driven or a vacillating approach than a shared approach, especially in the adult intensive care. Doctors did not verify whether their chosen approach matched the families' decision-making preferences. CONCLUSIONS: Even though tailoring doctors' communication to families' preferences is advocated, it does not seem to be integrated into actual practice. To allow for true tailoring, doctors' awareness regarding the impact of their communicative behaviors is key. Educational initiatives should focus especially on improving doctors' skills in tactfully exploring families' decision-making preferences and in mutually sharing knowledge, values, and treatment preferences.

Patient-reported factors that influence the vestibular schwannoma treatment decision: a qualitative study.

PURPOSE: In cases of small- to medium-sized vestibular schwannomas, three management strategies can be opted for: active surveillance, surgery or radiotherapy. In these cases, the patient's preference is pivotal in decision-making. The aim of this study was to identify factors that influence a patient's decision for a particular management strategy. METHODS: A qualitative inductive thematic analysis was performed based on semi-structured interviews. Eighteen patients with small- to medium-sized vestibular schwannomas were interviewed. All patients were diagnosed or treated at one of the two participating university medical centers in the Netherlands. RESULTS: Ten themes were identified that influenced the decision, classified as either medical or patient-related. The medical themes that emerged were: tumor characteristics, the physician's recommendation, treatment outcomes and the perceived center's experience. The patient-related themes were: personal characteristics, anxiety, experiences, cognitions, logistics and trust in the physician. CONCLUSION: Knowledge of the factors that influence decision-making helps physicians to tailor their consultations to arrive at a true shared decision on vestibular schwannoma management.

Clinical and sociodemographic associations with treatment selection in major depression.

OBJECTIVE: To investigate treatment selection in a naturalistic sample of MDD outpatients and the factors influencing treatment selection in specialized psychiatric care. METHOD: Multinomial Logistic Regression analysis investigated associations between treatment selection and patients' sociodemographic and clinical characteristics, using retrospective chart review data and Routine Outcome Monitoring (ROM) data of MDD outpatients. RESULTS: Of the patients included for analyses (N = 263), 34% received psychotherapy, 32% received an antidepressant (AD) and 35% received a combination. Men were more likely than women to receive AD with reference to psychotherapy (ORAD = 5.57, 95% CI 2.38-13.00). Patients with severe depression and patients with AD use upon referral, prescribed by their general practitioner, were more likely to receive AD (ORsevere depression = 5.34, 95% CI 1.70-16.78/ORAD GP = 9.26, 95% CI 2.53-33.90) or combined treatment (ORsevere depression = 6.32, 95% CI 1.86-21.49/ORAD GP = 22.36, 95% CI 5.89-83.59) with respect to psychotherapy. More severe patients with AD upon referral received combined treatment less often compared to psychotherapy (OR = 0.14, 95% CI 0.03-0.68). CONCLUSION: AD prescriptions in primary care, severity and gender influenced treatment selection for depressive disorders in secondary psychiatric care. Other factors such as the accessibility of treatment and patient preferences may have played a role in treatment selection in this setting and need further investigation.

Factors associated with frequency of discussion of or referral for counselling about fertility issues in female cancer patients.

Current practices in counselling of female cancer patients with respect to fertility issues need considerable improvement, particularly given the general underuse of fertility preservation options and the negative impact that infertility can have on quality of life. We investigated the relationship between physicians' and physician-related factors and the frequency of physicians discussing fertility issues and referring to a reproductive specialist. We invited 1,832 physicians in the Netherlands who had treated at least five reproductive-age female cancer patients within the past year to complete a questionnaire. Of the 748 respondents, 406 met our inclusion criteria, and 280 participated. Analysis revealed that 79% of the participants usually or always discuss fertility issues. Specialty, confidence in knowledge regarding fertility issues and a lack of reproductive specialists in their region contributed independently to the variance in the frequency of discussing fertility issues. Moreover, 54% either regularly or always refer. Specialty and frequency of discussion contributed independently to the variance in referral. In conclusion, although high, frequency of discussion of fertility issues is not optimal, and referral seems limited. Patients would benefit from more knowledge among physicians regarding fertility issues and referral options, both in terms of informed choice, and more importantly, quality of life.

Treatment recommendations for older women with breast cancer: A survey among surgical, radiation and medical oncologists.

PURPOSE: As older women with breast cancer (BC) are underrepresented in trials, it is often unclear what represents the best treatment option for this patient group. To understand how oncologists approach the management of BC in older patients, we assessed their treatment recommendations. METHODS: In an online survey, 106 surgical, 37 radiation and 31 medical oncologists provided a treatment recommendation for hypothetical patients aged >70 years. Scenarios included loco-regional therapy with patient age varying at 76 and 84 years; systemic therapy with Karnofsky performance score varying at 90 and 50%; neo-adjuvant therapy; and adjuvant chemotherapy in triple-negative BC. RESULTS: Participants would less often recommend breast-conserving surgery plus radiotherapy for an 84 versus a 76-year-old patient (56% versus 73%, p = 0.001). They would more often accept omission of radiotherapy after breast-conserving surgery in older than in younger patients, if the patient wished to avoid this therapy (26% versus 4%, p < 0.001). All participants would propose systemic therapy for a high-recurrence risk patient with a good performance score, and 92% would still recommend therapy if the patient had a poor score (p < 0.001). Neo-adjuvant hormonal therapy followed by breast-conserving surgery for a large tumour was recommended by 27% of the participants. Adjuvant chemotherapy for an otherwise healthy woman with triple-negative BC was considered by 83% of the participants. CONCLUSIONS: Patient age and performance status influenced specialists' treatment recommendations. The observed recommendations for the treatment scenarios under investigation differ from older women's actual treatment. This discrepancy highlights the need for studies specifically targeting older patients.

Oncologist, patient, and companion questions during pretreatment consultations about adjuvant cancer treatment: a shared decision-making perspective.

OBJECTIVES: To assess the occurrence of questions that foster shared decision making, in particular cancer patients' understanding of treatment decisions and oncologists' understanding of patients' priorities, during consultations in which preference-sensitive decisions are discussed. Specifically, (a) regarding patient understanding, do oncologists ask about patients' preexisting knowledge, information preferences, and understanding and do patients and companions ask about the disease and treatment, and (b) regarding patient priorities, do oncologists ask about patients' treatment- and decision-related preferences and do patients and companions ask about the decision? METHODS: Audiotaped pretreatment consultations of 100 cancer patients with 32 oncologists about (neo)adjuvant treatment were coded and analyzed to document question type, topic, and initiative. RESULTS: The oncologists ascertained prior knowledge in 50 patients, asked 24 patients about preferred (probability) information, and invited questions from 56 patients. The oncologists asked 32 patients about treatment preferences and/or for consent. Respectively, one-third and one-fifth of patients and companions asked about treatment benefits compared with three-quarters of them who asked about treatment harms and/or procedures. CONCLUSIONS: It would be helpful to patients if oncologists more often assessed patients' existing knowledge to tailor their information provision. Also, patients could receive treatment recommendations that better fit their personal situation if oncologists collected information on patients' views about treatments. Moreover, by educating patients to ask about treatment alternatives, benefits, and harms, patients may gain a better understanding of the choice they have.

Sexual distress and associated factors among cervical cancer survivors: A cross-sectional multicenter observational study.

BACKGROUND: To assess whether sexual distress among cervical cancer (CC) survivors is associated with frequently reported vaginal sexual symptoms, other proposed biopsychosocial factors and whether worries about painful intercourse mediate the relation between vaginal sexual symptoms and sexual distress. METHODS: A cross-sectional study was conducted among 194 sexually active partnered CC survivors aged 25 to 69 years. Sexual distress, vaginal sexual symptoms, sexual pain worry, anxiety, depression, body image concerns, and relationship dissatisfaction and the sociodemographic variables age, time since treatment, and relationship duration were assessed by using validated self-administrated questionnaires. RESULTS: In total, 33% (n = 64) of the survivors scored above the cut-off score for sexual distress. Higher levels of sexual distress were shown to be associated with higher levels of vaginal sexual symptoms, sexual pain worry, relationship dissatisfaction, and body image concerns. Furthermore, the results showed that sexual pain worry partly mediated the association between vaginal sexual symptoms and sexual distress, when controlling for relationship dissatisfaction and body image concerns. CONCLUSIONS: Appropriate rehabilitation programs should be developed for CC survivors to prevent and reduce not only vaginal sexual symptoms but also sexual pain worry, relationship dissatisfaction, and body image concerns to reduce sexual distress.

Determinants of participation in a cardiometabolic health check among underserved groups.

Cardiometabolic diseases affect underserved groups disparately. Participation in health checks is also lower, widening health inequalities in society. Two-stage screening (non-invasive health risk assessment (HRA) and GP consultations for high-risk individuals) seems cost-effective, provided that drop-out rates are low in both steps. We aimed to explore the process of decision-making regarding HRA participation among underserved groups (45-70 y): native Dutch with a lower socioeconomic status (SES), Turkish, Moroccan, and Surinamese participants. We conducted a cross-sectional questionnaire study. The questionnaire comprised the following determinants: a self-formulated first reaction, a structured set of predefined determinants, and the most important barrier(s) and facilitator(s) for HRA completion. We used univariable and (stepwise) multivariate logistic regression analyses to assess which determinants were associated with HRA completion. Of the 892 participants in the questionnaire, 78% (n = 696) also completed the HRA. Moroccans and patients from GP practices with a predominantly non-Western population less often completed the HRA. A lower SES score, wanting to know one's risk, not remembering receiving the invitation (thus requiring a phone call), fear of the test result and/or adjusting lifestyle, perceived control of staying healthy, wanting to participate, and perceiving no barriers were associated with completing the HRA. We conclude that our 'hard-to-reach' population may not be unwilling to participate in the HRA. A more comprehensive approach, involving key figures within a community informing people about and providing help completing the HRA, would possibly be more suitable. Efforts should be particularly targeted at the less acculturated immigrants with an external locus of control.

The EORTC QLQ-CR29 quality of life questionnaire for colorectal cancer: validation of the Dutch version.

PURPOSE: To validate the Dutch version of the EORTC QLQ-CR29 quality of life questionnaire for colorectal cancer. METHODS: We translated and pilot-tested the original questionnaire in the Netherlands, following EORTC guidelines. We assessed factor structure, reliability and construct validity in different samples of patients from four hospitals. RESULTS: Of 296 patients, 236 (80 %) returned the questionnaire, and 27 out of 48 patients returned the retest questionnaire. In addition to the original three scales, we found a reliable bowel functioning scale (α = 0.80), reducing the number of individual items by five. Two of the other scales had sufficient to good reliability (urinary frequency, α = 0.71, original α = 0.75, body image α = 0.80, original α = 0.84), the third, blood and mucus in stool, only moderate (α = 0.56, original α = 0.69). Item functioning was sufficient to excellent for all but two items (urinary incontinence and dysuria). Construct validity was similar to that in earlier studies. CONCLUSION: We found a very satisfactory scale for bowel problems, in patients both with and without stoma. The body image and urinary incontinence scales were reliable, and construct validity was sufficient. We suggest the questionnaire to be adapted to decrease the number of individual items, improve the scales, and therefore increase reliability of the entire questionnaire.

Shared decision making: Concepts, evidence, and practice.

OBJECTIVE: Shared decision-making (SDM) is advocated as the model for decision-making in preference-sensitive decisions. In this paper we sketch the history of the concept of SDM, evidence on the occurrence of the steps in daily practice, and provide a clinical audience with communication strategies to support the steps involved. Finally, we discuss ways to improve the implementation of SDM. RESULTS: The plea for SDM originated almost simultaneously in medical ethics and health services research. Four steps can be distinguished: (1) the professional informs the patient that a decision is to be made and that the patient's opinion is important; (2) the professional explains the options and their pros and cons; (3) the professional and the patient discuss the patient's preferences and the professional supports the patient in deliberation; (4) the professional and patient discuss the patient's wish to make the decision, they make or defer the decision, and discuss follow-up. In practice these steps are seen to occur to a limited extent. DISCUSSION: Knowledge and awareness among both professionals and patients as well as tools and skills training are needed for SDM to become widely implemented. PRACTICE IMPLICATIONS: Professionals may use the steps and accompanying communication strategies to implement SDM.

Decision consultations on preoperative radiotherapy for rectal cancer: large variation in benefits and harms that are addressed.

BACKGROUND: For shared decision making to be successful, patients should receive sufficient information on possible benefits and harms of treatment options. The aim of this study was to evaluate what information radiation oncologists provide during the decision consultation about preoperative radiotherapy with rectal cancer patients. METHODS: Decision consultations of 17 radiation oncologists with 81 consecutive primary rectal cancer patients, eligible for short-course radiotherapy followed by a low-anterior resection, were audio taped. Tapes were transcribed and analysed using the ACEPP (Assessing Communication about Evidence and Patient Preferences) coding scheme. RESULTS: A median of seven benefits/harms were addressed per consultation (range, 2-13). This number ranged within and between oncologists and was not clearly associated with the patient's characteristics. A total of 30 different treatment outcomes were addressed. The effect of radiotherapy on local control was addressed in all consultations, the effect on survival in 16%. The most important adverse effects are bowel and sexual dysfunction. These were addressed in 82% and 85% of consultations, respectively; the latter significantly less often in female than in male patients. Four out of five patients did not initiate discussion on any benefits/harms. CONCLUSIONS: Our results showed considerable inconsistency between and within oncologists in information provision, which could not be explained by patient characteristics. This variation indicates a lack of clarity on which benefits/harms of radiotherapy should be discussed with newly-diagnosed patients. This suboptimal patient information hampers the process of shared decision making, in which the decision is based on each individual patients' weighing of benefits and harms.

Treatment preferences and involvement in treatment decision making of patients with endometrial cancer and clinicians.

BACKGROUND: Vaginal brachytherapy (VBT) in high-intermediate-risk endometrial cancer (EC) provides a significant reduction in the risk of local cancer recurrence, but without survival benefit and with increased mucosal atrophy. Five-year local control is estimated to be similar for VBT and a watchful waiting policy (WWP), in which patients receive VBT combined with external radiation in case of a recurrence. Our aim was to assess treatment preferences of EC patients and clinicians regarding VBT and WWP, and to evaluate their preferred and perceived involvement in treatment decision making. METHODS: Interviews were held with 95 treated EC patients. The treatment trade-off method was used to assess the minimally desired benefit from VBT in local control. Patients' preferred and perceived involvement in decision making were assessed using a questionnaire. Seventy-seven clinicians completed a questionnaire assessing their minimally desired benefit and preferred involvement in decision making. RESULTS: Minimally desired benefit of VBT was significantly lower for patients than for clinicians (median=0 vs 8%, P<0.001), for irradiated than for non-irradiated patients (median=0 vs 6.5%, P<0.001), and for radiation oncologists than for gynaecologists (median=4 vs 13%, P<0.001). Substantial variation existed within the groups of patients and clinicians. Participants preferred the patient and clinician to share in the decision about VBT. However, irradiated patients indicated low perceived involvement in actual treatment decision making. CONCLUSIONS: We found variations between and within patients and clinicians in minimally desired benefit from VBT. However, the recurrence risk at which patients preferred VBT was low. Our results showed that patients consider active participation in decision making essential.

Primary-care patients' trade-off preferences with regard to antidepressants.

BACKGROUND: Antidepressants are frequently prescribed but results regarding their efficacy have been equivocal for different spectra of the severity continuum and their side-effects are often burdensome. Non-adherence is a likely consequence. The objective was therefore to examine patients' trade-offs between the efficacy, side-effects and other drawbacks of antidepressants and whether these trade-offs predicted non-adherence. METHOD: Trade-offs from 225 antidepressant users, recruited through community pharmacies, were assessed with an Adaptive Conjoint Analysis (ACA) choice task that was customized to each individual patient. From the estimated utilities, relative importance scores of treatment properties were calculated. Non-adherence was measured through self-report and pharmacy refill data. RESULTS: Relapse prevention and symptom relief were on average equally important. Side-effects were as important and the side-effect stomach and intestine complaints was on average even slightly more important than relapse prevention and symptom relief. Additional treatment with psychotherapy was preferred by 61% of the patients. A benefit/drawback ratio revealed that 18% of the patients did not consider the efficacy to outweigh the drawbacks. A higher benefit/drawback ratio was associated with a decreased odds of intentional non-adherence [odds ratio (OR) 0.2, 95% confidence interval (CI) 0.07-0.7, Wald = 6.7, p = 0.01). CONCLUSIONS: For nearly one in five patients, the efficacy of antidepressants does not outweigh their drawbacks. Knowing patients' trade-offs is likely to aid both physicians and patients to identify important treatment preferences, to improve adherence and to make more deliberate decisions on whether or not to continue treatment.

Preoperative risk information and patient involvement in surgical treatment for rectal and sigmoid cancer.

AIM: Surgery for rectal and sigmoid cancer is a model setting for investigating preoperative information provision and shared decision making (SDM), as the decision consists of a trade-off between the pros and cons of different treatment options. The aim of this study was to explore surgeons' opinion on the preoperative information that should be given to rectal and sigmoid cancer patients and to evaluate what is actually communicated. In addition, we assessed surgeons' attitudes towards SDM and compared these with patient involvement. METHOD: A questionnaire was sent to Dutch surgeons with an interest in gastroenterology. Preoperative consultations were recorded. A checklist was used to code the information that surgeons communicated to the patients. The OPTION-scale was used to measure patient involvement. RESULTS: Questionnaires were sent to 240 surgeons, and 103 (43%) responded. They stated that information on anastomotic leakage and its consequences, the benefits and risks of a defunctioning stoma and the impact of a stoma on quality of life were necessary preoperative information. In practice, patients were inconsistently informed of these items. Most participants agreed to using SDM in their consultations. However, in practice, most patients were offered only one treatment option and little SDM was seen. The mean OPTION-score was low (7/100). CONCLUSION: Insufficient information is given to patients with rectal and sigmoid cancer to guide them on their preferred surgical option. Information should be given on all treatment options, together with their complications and outcome, before any decision is made.

Trade-off preferences regarding adjuvant endocrine therapy among women with estrogen receptor-positive breast cancer.

BACKGROUND: There is substantial nonadherence to effective adjuvant endocrine therapy for breast cancer prevention. We therefore examined patients' trade-offs between the efficacy, side-effects, and regimen duration, and whether trade-offs predicted nonadherence. PATIENTS AND METHODS: Trade-offs from 241 women were assessed with an Adaptive Conjoint Analysis (ACA) choice task that was customized to each individual patient. From the estimated ACA utilities, the relative importance of each treatment property was calculated and a benefit/drawback ratio between the importance of the efficacy versus that of the side-effects and other treatment properties. Nonadherence was assessed through composites of validated self-report measures. RESULTS: Efficacy was most important. The side-effects joint and muscle pain and risk of endometrial cancer were almost as important. The benefit/drawback ratio showed 16% of the women to value the efficacy less than the side-effects and other treatment properties. A higher benefit/drawback ratio was associated with decreased nonadherence [adjusted odds ratio (OR) 0.1, 95% confidence interval 0.03-0.3]. CONCLUSIONS: One in six women do not consider the efficacy of endocrine therapy to outweigh its drawbacks. Knowing women's trade-offs is likely to identify women at risk for nonadherence and to help clinicians in tailoring their communication and care to different needs of individual women.

Shared decision making: really putting patients at the centre of healthcare.

Although many clinicians feel they already use shared decision making, research shows a perception-reality gap. A M Stiggelbout and colleagues discuss why it is important and highlight some best practices.

Patients' needs and preferences in routine follow-up for early breast cancer; an evaluation of the changing role of the nurse practitioner.

BACKGROUND: In evaluating follow-up of early breast cancer, patients' views on care are important. The aim of this study was to evaluate the effect of the introduction of nurse practitioners (NPs) in a breast cancer unit on patients' informational needs, preferences and attitude towards follow-up. PATIENTS AND METHODS: A cross-sectional survey was performed among two groups in 2005. Group A (n = 89) consisted of patients operated before, and group B (n = 100) after the introduction of a breast cancer unit (respectively in 1998-1999 and 2001-2004). RESULTS: Response was 72% in group A and 84% in group B. Median follow-up was 69 (54-86) and 33 (0-57) months, respectively. Aspects highly appreciated by patients in both groups were lifetime follow-up, information about prognosis, life style and additional investigations. Important discussion subjects were fatigue, pain, genetic factors, prevention and arm function/lymph-oedema. Less valued aspects were information about peers, conversations with psychologists or social workers, breast reconstruction, and acceptation by family members. The informational needs and preferences did not differ statistically significantly between both groups. In group B, communication with the caregiver was valued higher and more patients indicated that the caregiver took the time needed. More patients in group B indicated that follow-up could be performed by the NP. Duration of follow-up correlated with preferred frequency, not with informational needs in follow-up, only young age increased these needs. CONCLUSION: Despite the limitations of this retrospective study, we conclude that while expectations and informational needs did not change with the introduction of a NP to the standard care, patient satisfaction increased and communication and time taken were appreciated more.

Professionals' opinion on follow-up in breast cancer patients; perceived purpose and influence of patients' risk factors.

AIM: To provide insight into professionals' opinions on breast cancer follow-up to facilitate implementation of new follow-up strategies. The study focuses on current practice, purpose and perceived effects, and preferred frequency and duration of follow-up. DESIGN: A 29-item questionnaire on professionals' demographics, current practice, opinion on the current guideline, preferences in frequency and duration of tailored follow-up, and the purpose and perceived effects of follow-up was sent to 633 Dutch professionals. RESULTS: The current national guideline is followed by 81% of respondents. All different specialists are involved in follow-up. Sixty-nine percent of respondents' report nurse practitioners to be involved in follow-up. When asked for tailored follow-up, professionals indicate more factors for increased follow-up (age<40 years, pT3-4 tumour, pN2-3, treatment related morbidity, and psychosocial support), than for reduced schedules (age >70 years and DCIS histology). Alternative forms of follow-up are not endorsed by >90% of respondents. Detection of a new primary tumour of the breast is considered the most important purpose of follow-up (98%), 57% still indicates detecting metastases as a goal. CONCLUSIONS: Professionals tend towards longer and more intensive follow-up than the current guideline for a large group of patients. Limitations and developments in follow-up need to be considered to facilitate alternative follow-up strategies.

Perceiving cancer-risks and heredity-likelihood in genetic-counseling: how counselees recall and interpret BRCA 1/2-test results.

Previous studies on the counsellees' perception of DNA test results did not clarify whether counsellees were asked about their recollections or interpretations, and focused only on patients' own risks and not on the likelihood that cancer is heritable in the family. We tested differences and correlations of four perception aspects: recollections and interpretations of both cancer risks and heredity likelihood. In a retrospective study, women tested for BRCA1/2 on average, 5 years ago, completed questionnaires about their perception. Participants had received an unclassified variant (n = 76), uninformative (n = 76) or pathogenic mutation (n = 51) result in BRCA1/2. Analyses included t-tests, correlations and structural equation modelling. The counsellees' perception showed to consist of four distinctive phenomena: recollections and interpretations of cancer risks and of heredity likelihood. This distinctiveness was suggested by significant differences between these perception variables. Moderate to strong correlations were found between these variables, suggesting that these differences between variables were consistent. The relationships between these variables were not influenced by actually communicated DNA test results, sociodemographics, medical and pedigree information, or framing of cancer risk questions. The largest differences between recollections and interpretations were found in the unclassified variant group and the smallest in uninformatives. Cancer risks and heredity likelihood correlated least in the pathogenic mutation group. Communication of ambiguous genetic information enlarged the differences. To understand the counsellees' perception of genetic counselling, researchers should study recollections and interpretations of cancer risks and heredity likelihood. Genetic counsellors should explicitly address the counsellees' recollections and interpretations, and be aware of possible inaccuracies.