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14. Doctor's views on disclosing or withholding information on low risks of complication

Author

Palmboom, G.G., Willems, D.L., Janssen, N.B.A.T, and de Haes, J.C.J.M.

Subjects
Confidential communications, Medical ethics, Physician and patient, Health, Philosophy and religion
Abstract

Background: More and more quantitative information is becoming available about the risks of complications arising from medical treatment. In everyday practice, this raises the question whether each and every risk, however low, should be disclosed to patients. What could be good reasons for doing or not doing so? This will increasingly become a dilemma for practitioners. Objective: To report doctors' views on whether to disclose or withhold information on low risks of complications. Methods: In a qualitative study design, 37 respondents (gastroenterologists and gynaecologists or obstetricians) were included. Focus group interviews were held with 22 respondents and individual indepth interviews with 15. Results: Doctors have doubts about disclosing or withholding information on complication risk, especially in a risk range of 1 in 200 to 1 in 10 000. Their considerations on whether to disclose or to withhold information depend on a complicated mix of patient and doctor-associated reasons; on medical and personal considerations; and on the kind and purpose of intervention. Discussion: Even though the degree of a risk is important in a doctor's considerations, the severity of the possible complications and patients' wishes and competencies have an important role as well. Respondents said that low risks should always be communicated when there are alternatives for the intervention or when the patient may prevent or mitigate the risk. When the appropriateness of disclosing risks is doubtful, doctors should always tell their patients that no intervention is without risk, give them the opportunity to gather all the information they need or want, and enable them to detect a complication at an early stage.

Published
2007

24. A randomized controlled trial of a skills training for oncologists and a communication aid for patients to stimulate shared decision making about palliative systemic treatment (CHOICE): study protocol

Author

MS Medische Oncologie, Cancer, Henselmans, I, Smets, Ellen M A, de Haes, J.C.J.M., Dijkgraaf, Marcel G. W., de Vos, F Y, van Laarhoven, Hanneke W M, MS Medische Oncologie, Cancer, Henselmans, I, Smets, Ellen M A, de Haes, J.C.J.M., Dijkgraaf, Marcel G. W., de Vos, F Y, and van Laarhoven, Hanneke W M

Published
2018

27. Using cognitive and affective illustrations to enhance older adults’ website satisfaction and recall of online cancer-related information

Author

Bol, R., van Weert, J.C.M., de Haes, J.C.J.M., Loos, Eugène, De Heer, S, Sikkel, D., Smets, E.M.A., LS Management van Cultuur en Zingeving, UU LEG Research USG Public Matters Managing Social Issues, UU LEG Research USG Public Matters, Persuasive Communication (ASCoR, FMG), Faculteit der Geneeskunde, Medical Psychology, and APH - Amsterdam Public Health

Subjects
Adult, Male, Attractiveness, Gerontology, Health (social science), Emotional support, website satisfaction, Adolescent, recall, Young Adult, Patient Education as Topic, Neoplasms, Medical Illustration, Humans, illustrations, Aged, Aged, 80 and over, Internet, Recall, Communication, aging, Cognition, Consumer Behavior, Middle Aged, Comprehension, Affect, Younger adults, Mental Recall, e-health, Female, cancer-related information, Health information, Psychology, comprehension, Social psychology
Abstract

This study examined the effect of adding cognitive and affective illustrations to online health information (vs. text only) on older adults’ website satisfaction and recall of cancer-related information. Results of an online experiment among younger and older adults showed that illustrations increased satisfaction with attractiveness of the website. Younger adults were significantly more satisfied with the comprehensibility of the website than older adults, whereas older adults were more satisfied with perceived emotional support from the website than younger adults. Being more emotionally satisfied with the website led to greater recall of information for older adults, but not for younger adults. Illustrations can be used to enhance older adults’ website satisfaction and consequently recall of online cancer-related information.

Published
2014

31. Informing relatives about their hereditary or familial cancer risk: study protocol for a randomized controlled trial

Author

de Geus, E.D., Aalfs, C.M., Verdam, M.G.E., de Haes, J.C.J.M., Smets, E.M.A., Dep Infectieziekten Immunologie, I&I RATIA-SIB, Strategic Infection Biology, Graduate School, Human Genetics, Medical Psychology, Amsterdam Public Health, Developmental Psychopathology (RICDE, FMG), Faculteit der Geneeskunde, Dep Infectieziekten Immunologie, I&I RATIA-SIB, and Strategic Infection Biology

Subjects
Research design, Health Knowledge, Attitudes, Practice, Heredity, Colorectal cancer, Medicine (miscellaneous), law.invention, Study Protocol, family communication, Randomized controlled trial, Risk Factors, law, Pharmacology (medical), Genetic Privacy, intervention, Netherlands, Ovarian Neoplasms, medicine.diagnostic_test, Self Efficacy, Pedigree, hereditary cancer, Research Design, Colonic Neoplasms, Female, Family Relations, Risk assessment, Psychosocial, Clinical psychology, medicine.medical_specialty, Genetic counseling, Breast Neoplasms, Truth Disclosure, Risk Assessment, Patient Education as Topic, Telephone counseling, Predictive Value of Tests, medicine, Humans, Family, Genetic Predisposition to Disease, Genetic Testing, Genetic testing, Motivation, genetic counseling, business.industry, medicine.disease, Telephone, Family medicine, randomized controlled trial, business
Abstract

Background: Genetic counseling for hereditary breast or colon cancer has implications for both counselees and their relatives. Although counselees are encouraged by genetic counselors to disclose genetic cancer risk information, they do not always share this information with their at-risk relatives. Reasons for not informing relatives may be generally categorized as a lack of knowledge, motivation and/or self-efficacy. Presented here is the protocol of a randomized controlled trial that aims to establish the effectiveness of an intervention focused on supporting counselees in their disclosure of genetic cancer information to their relatives.Methods/Design: A multicenter randomized controlled trial with parallel group design will be used to compare the effects of an additional telephone counseling session performed by psychosocial workers to enhance the disclosure of genetic cancer information to at-risk relatives (intervention group) with a control group of standard care. Consecutive index patients with relatives at risk for hereditary or familial breast and/or ovarian cancer or colon cancer, are randomly assigned (block size: 8; 1:1 allocation ratio) to the intervention (n = 132) or control group (n = 132, standard care). Primary outcomes are counselees’ knowledge, motivation and self-efficacy regarding informing their relatives.Discussion: This intervention may prove important in supporting counselees to disclose hereditary and/or familial cancer risk information to at-risk relatives and may enable more at-risk relatives to make a well-informed decision regarding genetic services and/or screening.Trial registration: This trial is registered in the Netherlands National Trial Register (NTR) with trial ID number NTR3745.

Published
2014

33. Symptoomperceptie

Author

Kolk, A.M.M., de Haes, J.C.J.M., Kaptein, A.A., Prins, J.B., Collette, E.H., Hulsman, R.L., Klinische Psychologie (Psychologie, FMG), and Faculteit der Geneeskunde

Published
2010

34. Using cognitive and affective illustrations to enhance older adults’ website satisfaction and recall of online cancer-related information.

Author

LS Management van Cultuur en Zingeving, UU LEG Research USG Public Matters Managing Social Issues, UU LEG Research USG Public Matters, Bol, R., van Weert, J.C.M., de Haes, J.C.J.M., Loos, Eugène, De Heer, S, Sikkel, D., Smets, E.M.A., LS Management van Cultuur en Zingeving, UU LEG Research USG Public Matters Managing Social Issues, UU LEG Research USG Public Matters, Bol, R., van Weert, J.C.M., de Haes, J.C.J.M., Loos, Eugène, De Heer, S, Sikkel, D., and Smets, E.M.A.

Published
2014

37. The social experiences of cancer patients under treatment: a comparative study

Author

Tempelaar, R., de Haes, J.C.J.M., de Ruiter, J.H., Bakker, D., van den Heuvel, W.J.A., and van Nieuwenhuijzen, M.G.

Subjects
Quality of life -- Surveys, Cancer patients -- Social aspects, Social interaction -- Health aspects, Stigma (Social psychology) -- Health aspects, Health, Social sciences
Abstract

As part of a larger study on the quality of life of cancer patients under treatment, the positive and negative experiences in social interaction have been examined as compared to those of a control group (nonpatients, n = 201). Two patient groups were included: 109 patients who had recently undergone surgery and 108 patients receiving chemotherapy. The respondents returned a mailed questionnaire. Contrary to the assumptions based on a review from the literature, cancer patients appear to have more positive and fewer negative social experiences than a random sample from the 'normal' population. Even under more severe medical circumstances (a poor prognosis or heavy chemotherapy, a large number of chemotherapy cycles, poor progress after surgery) the poorer the patients, medically speaking, the more help and support they perceive. The results of this study do not support the idea of stigmatization. The personality characteristics, neuroticism and self-esteem are especially important for the having of positive and negative experiences in social interaction. Positive social experiences show a relationship with self-esteem and negative social experiences show a relationship with neuroticism.

Published
1989

40. Handboek Psychosociaal Oncologische Patiëntenzorg

Author

de Haes, J.C.J.M., Gualtherie van Weezel, L, Sanderman, R., Faculteit Medische Wetenschappen/UMCG, Experimental Psychotherapy & Psychopathology, and Health Psychology Research

Published
2001

42. Epidemiologie van Kanker: mate van vóórkomen en risicofactoren van kanker

Author

van Leeuwen, F.E, Ranchor, Adelita, Sanderman, R., Sanderman, R, van de Wiel, H B M, Gualtherie van Weezel, L, de Haes, J.C.J.M., Faculteit Medische Wetenschappen/UMCG, Experimental Psychotherapy & Psychopathology, Rijksuniversiteit Groningen, and Health Psychology Research

Published
2001

43. Organische psychosyndromen

Author

Gool, AR, Bannink, M, de Haes, J.C.J.M., Gualthérie v. Weezel, L.M., Sanderman, R., v.d. Wiel, H.B.M., and Psychiatry

Published
2001

44. Coping en controle

Author

Ranchor, Adelita, Schroevers, Maya, Sanderman, R., de Haes, J.C.J.M., Gualtherie van Weezel, L, Sanderman, R, van de Wiel, H B M, Faculteit Medische Wetenschappen/UMCG, Experimental Psychotherapy & Psychopathology, and Health Psychology Research

Published
2001

45. De terminale fase

Author

Willems, DL, de Haes, JCJM (Johanna), Bannink, M, Gool, AR, de Haes, J.C.J.M., Gualtherie van Weezel, L.M., Sanderman, R., van de Wiel, H.B.M., Public Health, and Psychiatry

Published
2001

46. Pijnbestrijding bij kanker

Author

Wit, R (Rianne), de Haes, J.C.J.M., Gualthérie v. Weezel, L.M., Sanderman, R., v.d. Wiel, H.B.M., and Psychiatry

Published
2001

48. Which chronic conditions are associated with better or poorer quality of life?

Author

Sprangers, MAG, de Regt, EB, Andries, F, van Agt, HME, Bijl, RV, de Boer, JB, Foets, M, Hoeymans, N, Jacobs, AE, Kempen, GIJM, Miedema, HS, Tijhuis, MAR, de Haes, HJM, de Haes, J.C.J.M., and Science in Healthy Ageing & healthcaRE (SHARE)

Subjects
OF-LIFE, health status, HEALTH SURVEY, MULTIPLE-SCLEROSIS, RHEUMATOID-ARTHRITIS, functioning, ILLNESSES, quality of life, comparison, FUNCTIONAL STATUS, SF-36, CHRONIC DISEASE, MEDICAL OUTCOMES, POPULATION
Abstract

The objective of the present study is to compare the QL of a wide range of chronic disease patients. Secondary analysis of eight existing data sets, including over 15,000 patients, was performed. The studies were conducted between 1993 and 1996 and included population-based samples, referred samples, consecutive samples, and/or consecutive samples. The SF-36 or SF-24 were employed as generic QL instruments. Patients who were older, female, had a low level of education, were not living with a partner, and had at least one comorbid condition, in general, reported the poorest level of QL. On the basis of rank ordering across the QL dimensions, three broad categories could be distinguished. Urogenital conditions, hearing impairments, psychiatric disorders, and dermatologic conditions were found to result in relatively favorable functioning. A group of disease clusters assuming an intermediate position encompassed cardiovascular conditions, cancer, endocrinologic conditions, visual impairments, and chronic respiratory diseases. Gastrointestinal conditions, cerebrovascular/neurologic conditions, renal diseases, and musculoskeletal conditions led to the most adverse sequelae. This categorization reflects the combined result of the diseases and comorbid conditions. If these results are replicated and validated in future studies, they can be considered in addition to information on the prevalence of the diseases, potential benefits of care, and current disease-specific expenditures. This combined information will help to better plan and allocate resources for research, training, and health care. (C) 2000 Elsevier Science Inc. All rights reserved.

Published
2000

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