Informing and involving cancer patients in their own care

doi:10.1016/S1470-2045(02)00877-X

The Lancet Oncology

Volume 3, Issue 10, October 2002, Pages 629-637

https://doi.org/10.1016/S1470-2045(02)00877-X Get rights and content

Summary

Doctors have long feared that disclosure of a cancer diagnosis may harm the patient. However, the vast majority of cancer patients in more developed countries prefer to have as much information as possible, regardless of whether it is good or bad. Moreover, these patients are often dissatisfied with the amount and quality of information they receive. Additionally, many patients are unable to participate to the extent that they wish in decisions about their own care, and doctors frequently fail to recognise or appreciate the role that their patients prefer in decision-making. Various information resources have been developed to meet the needs of patients and their families. This paper discusses the information needs and participation preferences of patients with cancer and the consequences of not meeting these expectations. The paper then reviews the types of information resources that have been developed focusing on their reported effectiveness. The review concludes with suggestions for future research.

Section snippets

Informational expectations of patients with cancer

Many studies have suggested that patients with cancer believe they are not given enough information. Cassileth and colleagues found that most cancer patients in the USA wanted detailed information about their cancer, whether the news was good or bad (figure 1).² This finding has been confirmed in surveys of patients with cancer in the UK, North America, and Australia.3, 5. A large study in the UK, involving 2231 patients, found that 87% of participants preferred to have as much information as

Effects of too little information

Clinicians tend to underestimate the amount of information that patients would like to receive.19, 20 Patients who feel poorly informed are not only dissatisfied with their care, but also may have reduced wellbeing.¹⁸ Among women with early breast cancer, patients who thought they had been poorly informed were twice as likely to be depressed or anxious, or both, compared with those who thought that they had been adequately informed.¹⁸

Lack of information can cause distress for patients and their

Participation in decision-making

Doctors appear to be moving toward a policy of greater disclosure of information about cancer diagnosis.²³ In 1961, 90% of US doctors indicated a preference for not telling a patient with cancer their diagnosis, whereas in 1979, 97% indicated a preference for revealing a diagnosis of cancer.

Meanwhile, there has been a shift toward increased participation by patients in their own medical care.²⁴ Increasingly, patients are health consumers and want to be active participants in medical

Improving participation by patients

One method proposed to allow patients to have more control over the flow of information during a consultation is to encourage them to ask more questions. Patients who actively participate in consultations by asking questions of their doctor are able to change the focus of the consultation and control the duration and amount of information provided.²⁵ Street found that the frequency with which patients asked questions was significantly related to the amount of information they received about

Misunderstandings by patients

Several researchers have noted that patients frequently show diverse misunderstandings about their illness, its prognosis, and treatment.42, 45 Mackillop and colleagues found that a third of patients with metastatic disease believed it was localised and a third of those receiving palliative treatment thought that treatment was curative in intent.⁴² Only 37% accurately cited the probability that treatment would cure their illness, with more than half overestimating their chances of cure. Other

Communication of information to patients

Ong and colleagues claimed that communication in medical care serves three major purposes: to create a good interpersonal relationship, to allow the exchange of information, and to facilitate medical decision-making.⁵¹ These aims are mainly achieved through face-to-face communication, both verbal and non-verbal. Most patients with cancer suggest that their oncologists are their most valued source of information.¹ Little effort has been made to address patients’ perceptions of information

Guidelines for the development of information

Many information resources are lacking in several areas including omission of relevant data, failure to give a balanced view of the effectiveness of different treatments, failure to include uncertainties, and rarely promoting a participative approach to decision-making.⁵² Several groups have produced information-development guidelines (figure 2 and panel 1) including the National Health and Medical Research Council in Australia and the Centre for Health Information Quality (figure 3) in the UK.

Information available to patients

Various methods have been used to facilitate the passage of information to patients with cancer. These include written information, telephone helplines, teaching and counselling services, audiovisual aids, such as audiotapes and videotapes, and multimedia resources such as CD-ROM and the internet. Some methods can be quite complex including, for example, combinations of printed information and counselling. Thus, to attribute changes to any one part of the approach is difficult. McPherson and

Written information

McPherson and colleagues found that written information was a feature of most of the methods evaluated and it increased recall and knowledge related to the information given.⁵⁴ This finding is consistent with that of Devine and Westlake.⁵⁵

Butow and colleagues assessed five commonly used cancer-information booklets and found that greater patient satisfaction was related to ease of readability of the information.⁵⁶ Cooley and colleagues found that only 27% of non-hospitalised patients with cancer

Written summaries and audiotapes of consultations

A systematic review of the effect of giving tape recordings or written summaries of consultations to patients with cancer identified eight randomised studies, but the quality of the studies was generally poor.⁶¹ The results consistently showed that most people who received summaries or audiotapes valued them. Across seven studies that provided such data, between 83% and 96% of people receiving the tapes found them useful. One study found that people who received bad news found a summary letter

Audiovisual aids

In 1985, Rainey reported the effect of preparatory education for patients with cancer who were undergoing radiotherapy.⁶⁶ 30 patients received standard information and an information booklet. Another 30 patients were shown a 12-minute slide-tape programme describing practical information about treatment, correcting common misconceptions, and encouraging questions. Compared with the standard cohort, patients shown the slide-tape programme had better treatment-related knowledge at the beginning

Videotapes

Thomas and colleagues did a study in patients about to start chemotherapy or radiotherapy, randomly assigning patients to receive standard written-information booklets with or without a video cassette.⁶⁷ They found that patients who also viewed the videotape were substantially more satisfied than those who received only the written information. Patients who watched the video had lower degrees of anxiety during treatment than at the initial pretreatment assessment, whereas no difference was seen

Computer-based resources

In a study designed to compare information booklets alone (control) with computer-based information, one group were given computer-based general information and another group were given personalised computer-based information derived from their medical record.⁶⁹ More of the latter than of the former group learnt new information, thought the information was relevant, used the computer again, and showed their printouts to others. More of the general-information group than of the personalised

Telephone helplines and support groups

Many patient support groups and cancer information telephone services enable patients to seek emotional support in addition to specific information.⁷¹ However, there have been no published randomised studies to assess the effect of these information sources. Both telephone services and support groups permit a personal interaction, distinct from the doctor–patient relationship.

Decision aids

The interventions described above are educational; they aim to provide patients with information, advice, and support for treatments and treatment decisions. By contrast, decision aids provide information to support an informed choice where more than one treatment option is available.⁷² They are intended to help patients and their doctors participate within a model of shared decision-making that enables a joint decision to be made, concordant with the individual values and needs of the patient.

Future directions

Almost all of the published work to date is from developed countries and describes the informational needs and participation preferences of English-speaking people. The needs and preferences of non-English-speaking people and those from other societies and cultures may be quite different. This is an important area to explore. Oncologists may have much greater difficulty meeting the expectations of patients from other cultures.

Despite the limitations discussed, studies so far have shown that

Conclusion

Most patients with cancer have great informational needs. Furthermore, many patients wish to participate in decisions about their own care. Improved communication skills on the part of healthcare providers, especially doctors and nurses, are likely to enable a more satisfying relationship for patients. Additionally, many information aids are effective at conveying information to patients with cancer. These interventions do not need to be complex and expensive to be successful. Further research

Search strategy and selection criteria

Published data for this review were identified by searches of Medline and Cochrane databases by use of the Mesh terms “patient education” or “patient participation” with “neoplasms” and either “decision making”, “videotape recording”, “tape recording”, “CD-ROM”, “Internet”, or non-Mesh terms such as “prompt sheet”, “telephone counselling”, or “support group”. Only papers published in English were included. References from relevant articles were also included.

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Comprehensive understanding of oncologic treatment is essential for shared decision-making. However, comprehension of information in radiation oncology consults is poorly understood, particularly among Spanish-speaking patients at safetynet hospitals. The purpose of this pilot study was to examine post-consultation radiation oncology knowledge and health literacy among breast cancer patients from culturally diverse backgrounds.
After consultation for curative post-operative breast radiotherapy (cT1-4N1-3M0), the Radiation Oncology Knowledge Assessment Survey (ROKAS) was administered to Spanish- and English-speaking patients ≥ 18 years old, from January 2021 to January 2022 at a safety-net hospital. Radiation knowledge was assessed using the ROKAS which included eight radiation-specific multiple-choice questions and two separate questions regarding short- and long-term side effects. Additional independent variables included validated questionnaires related to health literacy, health numeracy, acculturation, primary language, and sociodemographic factors. Bivariate Pearson correlations and T-test analyses were conducted to examine the relationship between the independent variables and post-consultation radiation knowledge.
Fifty ROKAS were obtained from 25 English- and 25 Spanish-speaking breast cancer patients (median age 57 [IQR 49.75-62.25]). When compared to Englishspeaking patients, Spanish-speaking patients had lower health literacy, health numeracy, and acculturation. There was no difference in the multiple-choice ROKAS score between English- and Spanish-speakers, or correlation with the other independent factors. Higher health numeracy correlated with a higher accuracy for identifying short-term side effects. Lower accuracy of identifying long-term side effects was seen in patients with lower education levels, health literacy, health numeracy, and acculturation, with the most missed long-term side effects being arm swelling, skin toxicity, and heart toxicity.
Patients with low health literacy, health numeracy, acculturation, and education levels as well as Spanish-speaking patients were associated with poor understanding of radiotherapy long-term side effects. Determining barriers to radiation knowledge is crucial to improve shared decision-making between patients and providers in a culturally diverse population.
The unmet supportive care needs, quality of life, and care experiences of patients with functioning and non-functioning Neuroendocrine tumours (NETs) at early diagnosis
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Citation Excerpt :
National Safety and Quality Health Service Standards within Australia further emphasises that the provision of high quality comprehensible information is critical in providing safe quality of care. Poorly informed patients are more likely not to participate in medical decision making, experience greater anxiety and seek alternative therapies that are not scientifically supported [48] and further where patients lack an understanding of their stage and disease, overall survival can be impacted [49]. Conversely those that engage with supportive care services and utilise online information resources have shown increased positive emotions [41] and improved psychological well-being [50].
Healthcare experiences, quality of life and psychosocial needs of patients with Neuroendocrine tumours (NETs) will be assessed to identify differences between NET sub-groups and inform the design of supportive care services.
This study constitutes phase one of a three-phase mixed-methods multi-site study with NET patients (n = 123). Demographic, clinical and patient reported outcome questionnaire data was collected.
No differences in patient reported outcomes were found beyond symptoms of diarrhoea and flushing between NET sub-groups. For combined NET patients, the majority reported negative experiences in their understanding of the explanation of what was wrong with them (67%); receiving written information about their cancer (69%), their family/carer receiving all the information required to care for them (61%); and the usefulness of information about NETs online (66%). NET patients reported at least one moderate-to-high need for disease specific information (63%). Medium- to large-sized differences in quality of life subscales were also observed with the functioning group reporting more anxiety compared to population norms.
There is a need to improve the current provision of information for people with NETs.
These findings will inform the design and development of an informational resource to facilitate improved understanding for patients with NETs.
Virtual Geritalk: Improving Serious Illness Communication of Clinicians Who Care for Older Adults
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High quality communication is essential to older adults’ medical decision-making, quality of life, and adjustment to serious illness. Studies have demonstrated that Geritalk, a two day (16 hours total) in-person communication skills training improves self-assessed preparedness, skill acquisition, and sustained practice of communication skills. Due to the COVID-19 pandemic, Geritalk was adapted to a virtual format (four days, 10 hours total).
Our study evaluated the change in participants’ self-assessed preparedness for serious illness communication before and after the virtual course and satisfaction with the course, and compared these findings to responses from a prior in-person Geritalk course.
Geriatrics and Palliative Medicine fellows at three urban academic medical centers completed surveys, which employed five-point Likert scales, before and after the virtual course to assess satisfaction with the course and preparedness for serious illness communication.
Of the 20 virtual Geritalk participants, 17 (85%) completed the pre-course assessment, and 14 (70%) completed the post-course assessment. Overall, satisfaction with the course was high (mean 4.9 on a 5‐point scale). Compared to in-person Geritalk participants, virtual course participants reported comparable and significant (P < 0.01) improvements in mean self-reported preparedness across all surveyed communication skills.
We show that a virtual communication skills training is feasible and effective. Our findings suggest that the innovative virtual Geritalk course has the potential to increase access to communication skills training, improve serious illness communication skills, and in improve the quality of care received by older adults with serious illness.
Preferences in trust regarding the provision of cancer information among adults
2021, Journal of the National Medical Association
: Disparities associated with trust in health information exist warranting a need for research assessing this relationship among adults. Therefore, the aim of this study was to assess trust of cancer information among U.S. adults.
: A weighted sample of 237,670,167 adults from the Health Information National Trends Survey (HINTS) from 2011-2014 was used for the analyses. Dependent variables were dichotomized answers to whether individuals trusted information from family/friends, the internet, or a doctor. Independent variables included age, sex, region, race/ethnicity, and cancer diagnosis to investigate associations between demographic factors and differences in trust. Logistic regression was run using R survey package.
: There were statistically significant differences in trust based on race/ethnicity, age, and cancer diagnosis. Minorities were less likely to trust information from a doctor, with Hispanics more likely to trust information from the internet (OR=1.8 (95% CI 1.36,2.43)), and Non-Hispanic Blacks trusting information from family and friends (OR=1.5 (95% CI 1.06, 2.13)). Adults ≥45 years of age were less likely to trust the doctor ‘a lot’ (45-64 years: OR=0.6 (95% CI 0.50, 0.83); 65+ years (OR=0.7 (95% CI 0.54, 0.92)), but more likely to not trust information from family and friends or the internet. Patients with cancer were more likely to trust information from a doctor ‘a lot’ (78%; p=0.01).
Significant differences in preferences regarding trust in cancer information occurred based on sociodemographic characteristics.
: These finding suggest targeting specific population subgroups for information from sources they trust could be helpful in reducing disparities in trust.
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To assess patient experiences and perspectives following Gamma Knife (GK) stereotactic radiosurgery (SRS) using frame versus mask immobilization.
Patients who received GK-SRS using both frame and mask immobilization were included in this study. One-on-one semi-structured interviews, led by a third-party expert, were used to gain insight into the patient experience. To reduce memory bias of either immobilization device, patients underwent the interview at their follow-up appointment. Initial assessment of patient transcriptions was completed by one study staff; a second member reviewed transcripts for thematic saturation. All interviews were independently coded for themes to minimize interpretation bias.
Fifteen patients were consented; 12 were successfully interviewed (3 lost due to deteriorating health status). Interviews ranged from 30 to 60 min in duration. The most common patient concern regarding the frame was pain (9 patients), while the primary concerns with the mask system were the ability to remain still (6 patients) and claustrophobia (4 patients). Eleven patients chose the mask as their preferred choice in terms of their overall experience. Two themes emerged during the interviews that spoke to patient satisfaction with each process: unexpected pain with frame placement; and tightness experienced while wearing the mask during treatment.
From the patient perspective there was overwhelming agreement that the mask was the preferred choice for GK-SRS. The patient experience could be improved by enhanced education to better prepare patients on what to expect during the frame placement and mask treatment processes.
Évaluer l'expérience et le point de vue des patients après une radiochirurgie stéréotaxique par scalpel gamma (RST-SG) avec immobilization par masque ou par cadre.
Des patients ayant subi une RST-SG avec immobilization par cadre et par masque ont été inclus dans l’étude. Des entrevues semi-structurées individuelles menées par un expert indépendant ont été utilisées pour comprendre l'expérience du patient. Pour diminuer le biais de mémoire face à chacun des dispositifs d'immobilization, l'entrevue avec chaque patient a été menée au moment du rendez-vous de suivi. L’évaluation initiale de la transcription de l'entrevue de chaque patient a été faite par un membre de l’équipe de l’étude; une deuxième membre a revu les transcriptions pour établir la saturation thématique. Pour toutes les entrevues, le codage des thèmes a été fait de façon indépendante afin de minimiser le biais d'interprétation.
Quinze patients ont accepté de participer à l’étude; des entrevues ont été menée avec succès avec 12 d'entre eux (trois ont été perdus en raison de la détérioration de leur état de santé). La préoccupation la plus courante chez les patients concernant le cadre était la douleur (9 patients), alors que les principales préoccupations par rapport au masque étaient la capacité de demeurer immobiles (6 patients) et la claustrophobie (4 patients). Onze patients ont dit préférer le masque en tenant compte de leur expérience globale. Deux thèmes ont émergé durant les entrevues en ce qui a trait à la satisfaction des patients face à chacun des processus: la douleur imprévue avec le positionnement du cadre; et la sensation de serrement avec le port du masque durant le traitement.
Du point de vue des patients, il y an un large consensus sur le choix du masque comme préférence pour la RST-SG. L'expérience des patients pourrait être améliorée par une meilleure éducation afin qu'ils sachent mieux à quoi ils doivent s'attendre durant le processus de positionnement du cadre et le traitement avec le masque.
Patient events in German urology: trend towards hybrid formats?
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ReviewInforming and involving cancer patients in their own care

Summary

Section snippets

Informational expectations of patients with cancer

Effects of too little information

Participation in decision-making

Improving participation by patients

Misunderstandings by patients

Communication of information to patients

Guidelines for the development of information

Information available to patients

Written information

Written summaries and audiotapes of consultations

Audiovisual aids

Videotapes

Computer-based resources

Telephone helplines and support groups

Decision aids

Future directions

Conclusion

Search strategy and selection criteria

Soc Sci Med

Ann Oncol

Patient Educ Couns

Ann Oncol

Soc Sci Med

Soc Sci Med

Soc Sci Med

Soc Sci Med

Ann Oncol

Soc Sci Med

Patient Educ Couns

Ann Oncol

Eur J Cancer

Eur J Cancer

The importance of information giving for patients newly diagnosed with cancer: a review of the literature.

J Clin Nurs

Information and participation preference among cancer patients.

Ann Intern Med

Cancer patients: their desire for information and participation in treatment decisions.

JR Soc Med

Information needs of patients with cancer: results from a large study in UK cancer centres.

Br J Cancer

The supportive care needs of newly diagnosed cancer patients attending a regional cancer center.

Cancer

Systematic review of randomised trials of interventions to assist patients to follow prescriptions for medications.

Lancet

Patient satisfaction with decision-making for breast cancer therapy.

Ann Surg Oncol

Expanding patient involvement in care: effects on patient outcomes.

Ann Intern Med

Patients' participation in medical care: effects on blood sugar control and quality of life in diabetes

J Gen Intern Med

Patient participation in deciding breast cancer treatment and subsequent quality of life

Med Decis Making

Informational needs of recently diagnosed cancer patients: part method and description

Cancer Nurs

The informational needs of patients with cancer and their families

Cancer Pract

Communicate with cancer patients: 1. Handling bad news and difficult questions

BMJ

Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial

BMJ

Information needs and decisional preferences in women with breast cancer.

JAMA

No news is not good news: information preferences of patients with cancer.

Psychooncology

Communication and information: the experience of radiotherapy patients.

Eur J Cancer Care (Engl)

Changes in physicians' attitudes toward telling the cancer patient.

JAMA

Patient-centered medicine: a professional evolution.

JAMA

Characteristics of physicians with participatory decision-making styles.

Ann Intern Med

Principles of healthcare ethics: consent and the doctor patient relationship.

Aust J Forensic Sci

Adding insult to injury: usurping patients' prerogatives.

N Engl J Med

Informing, communicating and sharing decisions with people who have cancer.

Review
Informing and involving cancer patients in their own care