Joël Vos

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

Vos J, Oosterwijk JC, Gómez‐García E, Menko FH, Jansen AM, Stoel RD, van Asperen CJ, Tibben A, Stiggelbout AM. Perceiving cancer‐risks and heredity‐likelihood in genetic‐counseling: how counselees recall and interpret BRCA 1/2‐test results.

Effectiveness and cost-effectiveness of meaning-centered group psychotherapy in cancer survivors: protocol of a randomized controlled trial

BackgroundMeaning-focused coping may be at the core of adequate adjustment to life after cancer. Cancer survivors who experience their life as meaningful are better adjusted, have better quality of life and psychological functioning. Meaning-Centered Group Psychotherapy for Cancer Survivors (MCGP-CS) was designed to help patients to sustain or enhance a sense of meaning and purpose in their lives. The aim of the proposed study is to evaluate the effectiveness and cost-effectiveness of MCGP-CS.Methods/DesignSurvivors diagnosed with cancer in the last 5 years and treated with curative intent, are recruited via several hospitals in the Netherlands. After screening, 168 survivors are randomly assigned to one of the three study arms: 1. Meaning-Centered Group Psychotherapy (MCGP-CS) 2. Supportive group psychotherapy (SGP) 3. Care as usual (CAU). Baseline assessment takes place before randomisation, with follow up assessments post-intervention and at 3, 6 and 12 months follow-up. Primary outcome is meaning making (PMP, PTGI, SPWB). Secondary outcome measures address quality of life (EORTC-30), anxiety and depression (HADS), hopelessness (BHS), optimism (LOT-R), adjustment to cancer (MAC), and costs (TIC-P, EQ-5D, PRODISQ).DiscussionMeaning-focused coping is key to adjustment to life after cancer, however, there is a lack of evidence based psychological interventions in this area. Many cancer survivors experience feelings of loneliness and alienation, and have a need for peer support, therefore a group method in particular, can be beneficial for sustaining or enhancing a sense of meaning. If this MCGP-CS is effective for cancer survivors, it can be implemented in the practice of psycho-oncology care.Trial registrationNetherlands Trial Register, NTR3571

The counselees' self-reported request for psychological help in genetic counseling for hereditary breast/ovarian cancer: not only psychopathology matters

Several studies have shown that counselees do not experience psychopathological levels of distress after DNA test result disclosure. However, it has not systematically been studied whether the absence of psychopathology also means that counselees do not want to receive help. Their self‐reported request for help may be related not only with psychopathology/distress but also with other psychological needs (e.g., surgery decisions), genetics‐specific needs (e.g., feeling vulnerable/stigmatized), and existential concerns (e.g., meaning in life).

The impact of social and personal resources on psychological distress in women at risk for hereditary breast cancer

Objective: The objectives of the present study were to (1) evaluate whether social and personal resources were independently related to psychological distress and (2) examine the interrelationships of social and personal resources in women at risk for hereditary breast cancer.

Meaning Making in Cancer Survivors: A Focus Group Study

Background Confrontation with a life-threatening disease like cancer can evoke existential distress, which can trigger a search for meaning in people after having survived this disease. Methods In an effort to gain more insight in the meaning making process, we conducted four focus groups with 23 cancer survivors on this topic. Participants responded to questions about experienced meaning making, perceived changes in meaning making after cancer and the perceived need for help in this area. Results Most frequently mentioned meaning making themes were relationships and experiences. We found that, in general, cancer survivors experienced enhanced meaning after cancer through relationships, experiences, resilience, goal-orientation and leaving a legacy. Some participants, however, also said to have (also) experienced a loss of meaning in their lives through experiences, social roles, relationships and uncertainties about the future. Conclusions The results indicated that there is a group of cancer survivors that has succeeded in meaning making efforts, and experienced sometimes even more meaning in life than before diagnosis, while there is also a considerable group of survivors that struggled with meaning making and has an unmet need for help with that. The results of this study contribute to develop a meaning centered intervention for cancer survivors.

Meaning-centered group psychotherapy in cancer survivors: a feasibility study

Nadia van der Spek*, Cornelia F. van Uden-Kraan, Joël Vos, William Breitbart, Rob A. E. M. Tollenaar, Christi J. van Asperen, Pim Cuijpers and Irma M. Verdonck-de Leeuw Department of Clinical Psychology, VU University, Amsterdam, The Netherlands Department of Otolaryngology Head & Neck Surgery, VU University Medical Center, Amsterdam, The Netherlands Counselling Psychology, Roehampton University, London, United Kingdom Department of Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, USA Department of Surgery, Leiden University Medical Center, Leiden, The Netherlands

The contribution of self-esteem and self-concept in psychological distress in women at risk of hereditary breast cancer

Objective: Clarification of the role of several aspects of self‐concept regarding psychological distress in women at risk of hereditary breast cancer will help to target counselling and psychosocial interventions more appropriately. In this study, we aimed (1) to examine the role of general self‐esteem and specific aspects of self‐concept (i.e. stigma, vulnerability, and mastery) in psychological distress in women at risk of hereditary breast cancer and (2) to compare the relative importance of these self‐concept aspects in psychological distress in women with low versus high self‐esteem.

Efficacy of meaning-centered group psychotherapy for cancer survivors: a randomized controlled trial

BACKGROUND The aim of this study was to assess the efficacy of meaning-centered group psychotherapy for cancer survivors (MCGP-CS) to improve personal meaning, compared with supportive group psychotherapy (SGP) and care as usual (CAU). METHOD A total of 170 cancer survivors were randomly assigned to one of the three study arms: MCGP-CS (n = 57); SGP (n = 56); CAU (n = 57). The primary outcome measure was the Personal Meaning Profile (PMP; total score). Secondary outcome measures were subscales of the PMP, psychological well-being (Scales of Psychological Well-being; SPWB), post-traumatic growth (Posttraumatic Growth Inventory), Mental Adjustment to Cancer (MAC), optimism (Life Orientation Test-Revised), hopelessness (Becks Hopelessness Scale), psychological distress (anxiety and depression, Hospital Anxiety and Depression Scale; HADS) and quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire; EORTC QLQ-C30). Outcome measures were assessed before randomization, post-intervention, and after 3 and 6 months of follow-up (FU). RESULTS Linear mixed model analyses (intention-to-treat) showed significant differences between MCGP-CS, SGP and CAU on the total PMP score, and on (sub)scales of the PMP, SPWB, MAC and HADS. Post-hoc analyses showed significantly stronger treatment effects of MCGP-CS compared with CAU on personal meaning (d = 0.81), goal-orientedness (d = 1.07), positive relations (d = 0.59), purpose in life (d = 0.69); fighting spirit (d = 0.61) (post-intervention) and helpless/hopeless (d = -0.87) (3 months FU); and distress (d = -0.6) and depression (d = -0.38) (6 months FU). Significantly stronger effects of MCGP-CS compared with SGP were found on personal growth (d = 0.57) (3 months FU) and environmental mastery (d = 0.66) (6 months FU). CONCLUSIONS MCGP-CS is an effective intervention for cancer survivors to improve personal meaning, psychological well-being and mental adjustment to cancer in the short term, and to reduce psychological distress in the long run.

Disentangling the Babylonian speech confusion in genetic counseling: An analysis of the reliability and validity of the nomenclature for BRCA1/2 DNA-test results other than pathogenic

Purpose: Effective communication of DNA-test results requires a sound terminology. However, the variety of terms in literature for DNA-test results other than pathogenic, may create inconsistencies between professionals, and misunderstanding in patients. Therefore, we conducted a theoretical and empirical analysis of the terms most frequently used in articles between 2002 and 2007 for BRCA 1/2-test results other than pathogenic.1Design: We analyzed the content validity of the no-pathogenic DNA-test result-terms by comparing the literal and intended meaning of the terms and by examining their clarity and the inclusion of all relevant information. We analyzed the reliability of the terms by measuring the strength of association between terms and their meanings and the consistency among different authors over time.Results: Two hundred twenty-seven articles with 361 no-pathogenic DNA-test result-terms were found. Only two terms seemed to have acceptable validity: variant of uncertain clinical significance and no-pathogenic-DNA-test-result. Only variant of uncertain clinical significance and true negative were found to be used reliably in the literature.Conclusions: Current DNA nomenclature lacks validity and reliability. Transparent DNA-test result terminology should be developed covering both laboratory findings and clinical meaning.

Working with Meaning in Life in Chronic or Life-Threatening Disease: A Review of Its Relevance and the Effectiveness of Meaning-Centred Therapies

More than 30 % of the population lives with a chronic or life-threatening physical disease. Of these individuals, 40 % also experience mental health problems and stress which exacerbate physical problems and health-care costs. More specifically, one third report pathological levels of anxiety and depression, and a majority mention stress as arising from the question of how they can still live a meaningful and satisfying life despite their disease. This question is usually not systematically addressed by traditional treatments such as cognitive-behavioural therapy, support groups and stress reduction programmes, which may explain their modest effect sizes in physically ill patients. This chapter shows how meaning is essential to a clinical–aetiological understanding of physical diseases, by integrating six dominant perspectives in health/medical psychology: assumptive worlds, change, existential coping, transcending, motivation and biological perspectives. This examination shows how the disease challenges everyday assumptions about the world, life, the self and meaning, which leads to patients asking: “How can I live a meaningful and satisfying life despite the physical, psychological, social and existential limitations of my disease?” Patients subsequently appraise their situation and assimilate the disease experience within their existing assumptions, transcend the situation by flexibly experiencing meaning despite being ill, change specific meanings in their lives or change their general perspective on life. These appraisal processes could lead to motivated lifestyle changes, psychological symptoms and a request for professional support. This model is specified for individuals with cancer, cardiovascular disease, chronic pain and heritable diseases. This clinical–aetiological model is also the basis of meaning-centred therapies, which strongly improve the quality of life, the experience of psychological stress and physical well-being in physically ill patients. Due to its relevance and effects, it is recommended that meaning-centred therapy be offered to individuals with a chronic or life-threatening physical disease.