The Information Needs of New Radiotherapy Patients: How to Measure? Do They Want to Know Everything? And if Not, Why?

doi:10.1016/j.ijrobp.2010.09.032

International Journal of Radiation OncologyBiologyPhysics

Volume 82, Issue 1, 1 January 2012, Pages 418-424

https://doi.org/10.1016/j.ijrobp.2010.09.032 Get rights and content

Purpose

To establish 1) further psychometric properties of the information preference for radiotherapy patients scale (IPRP); 2) what information new radiotherapy patients want to receive; 3) which patients have a lower information need.

Methods and Materials

Eligible patients (n = 159; response rate 54%) of 15 radiation oncologists completed the IPRP and provided background characteristics before their first radiotherapy consultation. Exclusion criteria were: age <18 years, having undergone radiotherapy before, unable to read and write Dutch, cognitive problems or a brain tumor.

Results

Reliability (Cronbach’s alpha 0.84–0.97) and concurrent validity (r from .39 to .57, p < 0.001) of the subscales of the IPRP were good. New radiotherapy patients want extensive information about their disease, treatment, procedures, side effects, and prognosis (mean scores between 4.1 and 4.4 on a scale from 1 to 5) but less information about psychosocial issues (mean = 3.4). Patients who are older and male, have lung or rectal cancer, more difficulty understanding and a higher trait anxiety level, need less information.

Conclusions

The IPRP can reliably and validly address information needs of patients undergoing radiation treatment. Most new radiotherapy patients want much information. Yet, information giving should be tailored according to their background, understanding and anxiety.

Introduction

Patient information giving has changed substantially over the last decades. Until the 1980s, information about disease, treatment, and prognosis was assumed to increase patient emotional distress, physical complaints, and treatment refusal. Most physicians indeed disclosed selected information only. Yet, these assumptions were not supported by evidence. Such evidence later indicated that information disclosure yields positive effects on cancer patients’ physical and mental health (1). This insight, and increased patient autonomy, provoked a shift toward emphasizing cancer patients’ right to receive full information about their medical condition (2).

Numerous studies now show that most patients prefer to be fully informed 3, 4, 5, 6 and that diagnostic information and information about side effects is desired by almost all patients 4, 7, 8. Yet, open and honest communication is not necessarily in the best interest of all patients. Some prefer less information and rather avoid hearing every detail of their situation. Quantitative studies report a minority of 5–36% of patients not wanting to know all details of their disease and treatment 3, 4, 9, 10, 11. Higher percentages were recently found in a palliative setting (12) and concerning prognostic information (13). Qualitative studies investigated cancer patients’ considerations not to desire information more extensively. These found that cancer patients often did not wish all information about their disease, treatment, and side effects 14, 15, 16, 17.

Various mechanisms can explain differences in information preferences among cancer patients. Firstly, sociodemographic variables were considered. A preference for limited information was found amongst older patients 18, 19, 20 and males 2, 4, 16. Some studies found no gender differences though (7). Non-Western patients also showed less information needs in some studies (21), but not in others 22, 23. Patients with low levels of education reported lower information needs 18, 24 in older studies, but recent studies report no effects of education 23, 25, 26. Yet, in a recent qualitative study patients were found to be afraid to lack the intellect or education to oversee medical information (15). Such information can be confusing and provoke uncertainty. Therefore, these patients may rather have faith in their doctor than ask for information they do not grasp.

Second, avoidance can serve as a coping strategy for patients when physicians confront them with probable negative outcomes. Indeed, Kaplowitz et al. (26) found patients reporting a greater need to avoid thinking about death and having more fear of cancer, to desire less prognostic information. Avoiding or denying information can help patients to reduce feelings of anxiety and preserve hope 15, 16, 27 and even to perceive less physical symptoms (28).

Radiation therapy is offered to approximately half of all cancer patients eventually. It is beneficial in the treatment of almost every solid cancer type. Given the complexity and unpleasantness of the treatment and the need for patients to understand procedures and follow up advice, informing them well is essential (29). Still, some patients may want more and others less information. The radiation oncologist is therefore expected to tailor the information given to individual patient needs 30, 31.

Instruments measuring patient information needs lacked specificity to the radiotherapy context. We therefore developed the Information Preferences of Radiotherapy Patients questionnaire (IPRP). The IPRP is designed to cover the relevant information in radiotherapy and it adopts multioption answer possibilities to advance measurement precision. It was found to be reliable and valid in a pilot study (32).

In the current article, we will report on:

1)
further testing of the IPRP’s reliability and concurrent validity;
2)
the information new radiotherapy patients want to receive at their first consultation; and
3)
factors explaining which patients have a lower information need.

Section snippets

Sample and procedures

Fifteen radiation oncologists of the outpatient radiotherapy department of the Academic Medical Centre in Amsterdam were invited and agreed to participate in this study. Six of them were still in training while nine were qualified. Their consecutive, new patients were selected. Exclusion criteria were: age <18 years, having undergone radiotherapy before, unable to read and write Dutch, and presenting with cognitive problems or a brain tumour. Eligible patients were mailed a questionnaire before

Sample

Of 293 eligible radiotherapy patients, 159 (54%) agreed to participate. Nonparticipants were generally older (t(291) = 2.407, p = 0.017) and had lower information needs (t(269) = 2.298, p = 0.022), but did not differ in gender. Five participants having too many missing values on the IPRP (≥5) were excluded from further analyses. Sample characteristics are given in Table 1.

Psychometric characteristics of the IPRP

Reliability turned out to be high for the IPRP total scale (Cronbach’s α = 0.97) as well as all subscales: disease (α =

Information needs

Radiotherapy is burdensome and has unpleasant side effects. Also, it is unfamiliar for most patients. For patients to accept treatment and adhere to treatment recommendations, understanding and good information provision are thus crucial. We developed the IPRP to assess the information needs of radiotherapy patients. The IPRP was found to have good psychometric properties in this study as in our earlier pretesting (32). It can therefore provide insight in information needs concerning different

Conclusions

We conclude that most new radiotherapy patients prefer to receive extensive information at their first consultation. Good information about treatment, procedures as well as side effects, and prognosis are of particular relevance. Yet, information giving should be tailored to patients’ background, understanding, and anxiety. This does not mean that a lower information need necessarily leads to less information giving. On the contrary, patients having difficulty understanding may need more

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Our purpose was to investigate the effect of physicist-patient consults on patient anxiety and patient satisfaction with a randomized prospective phase III clinical trial.
Sixty-six patients were randomly assigned to the physics direct patient care (PDPC) arm or the control arm of the trial. Patients assigned to the PDPC arm received 2 physicist-patient consults to educate them on the technical aspects of their radiation therapy, while patients assigned to the control arm received the standard of care (ie, standard radiation therapy workflow without any additional physicist-patient consults). Questionnaires were administered to all patients at 4 time points (after enrollment, after the simulation, after the first treatment, and after the last treatment) to assess anxiety and satisfaction.
The decrease in anxiety for the PDPC arm, compared with the control arm, was statistically significant at the first treatment (P = .027) time point. The increase in technical satisfaction for the PDPC arm, compared with the control arm, was statistically significant at the simulation (P = .005), first treatment (P < .001), and last treatment (P = .002) time points. The increase in overall satisfaction for the PDPC arm, compared with the control arm, was statistically significant at the first treatment (P = .014) and last treatment (P = .001) time points.
Physicist-patient consults improved the patient experience by decreasing anxiety and increasing satisfaction. Future work is needed to modify current radiation oncology workflows and medical physics responsibilities to allow all patients to benefit from this advancement in patient care.
Communication, perception, and use of personalized side-effect risks in prostate cancer treatment-decision making: An observational and interview study
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We investigated how healthcare professionals (HPs) communicate personalized risks of treatment side-effects to patients with localized prostate cancer during consultations, and explored how these patients perceive and use such risks during treatment decision-making.
Patient consultations with nurse practitioners and urologists discussing personalized risks of urinary incontinence after prostatectomy were audiotaped, transcribed, and coded. Patients (n = 27) were then interviewed to explore their perceptions and use of personalized side-effect risks.
HPs explained personalized risks by discussing risk factors, which was appreciated and recalled by patients. Personalized risks were typically communicated both numerically and verbally (70%). When using numbers, HPs always used percentages, but rarely used natural frequencies (14%). Uncertainty was disclosed in only 34% of consultations. One-third of patients used personalized risks in their treatment decision-making by either switching to another treatment or sticking to their initial preference.
Patients value and use personalized side-effect risks during treatment decision-making. Clearly explaining the relationship between risk factors and personalized risk estimates may help patients understand and recall those.
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HPs should not only give patients specific and precise numerical risk information, but should also put effort in explaining how the personalized side-effect risks are determined.
Could knowledge of patient demographics facilitate a personalized approach to radiation therapy patient education?
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Citation Excerpt :
[P75] “Ask what each person needs to know about each step”. Educational preferences may differ based on patient demographics [21], and recent research suggests that tailoring the amount and type of information, and the mode of delivery with a patient-centred approach results in improved patient outcomes [11]. This quality improvement initiative assessed the information preferences of patients receiving RT.
Using patient demographics to tailor cancer patient education processes results in improved patient outcomes. However, there is little information on how to successfully tailor radiation therapy (RT) educational content and delivery. The aim of this quality improvement project was to describe the information preferences of a diverse group of patients undergoing RT and determine if different RT education processes were associated with certain patient demographics.
An educational needs assessment questionnaire, based on a validated tool, was offered to all patients undergoing RT on a single day. Questionnaire sections included demographics and questions regarding the importance of topics related to RT treatments, desired mode of information delivery, quantity of information, desired timing of information, and satisfaction with information received. Patients were also asked to answer qualitative questions focused on what was working well and what could be improved. Participants’ responses were cohorted based on demographic groupings (age, gender, education level) and were tested for statistically significant differences and associations.
130 patients completed the questionnaire. Compared to those over 60 years, more participants who were 50 – 59 years old thought the topics were ‘very important’ (96% vs 77%, p<0.001) and wanted a higher quantity of information about the topics (80% vs 66%, p<0.001). More participants over 70 years old preferred pamphlets compared to those less than 70 years (48% vs 30%, p<0.047) while more participants under 50 years old preferred one-on-one sessions compared to those older than 50 years (40% vs 25%, p<0.038). Fewer participants <50 years wanted information at their first meeting with the Radiation Oncologist compared to those older than 50 years (57% vs 73%, p<0.001). Compared to the male cohort, more female participants felt the information topics were more important (83% vs 74%, p<0.0001) and had more unmet education needs (29% vs 17%, p<0.001). Compared to those with post-secondary education, more participants with primary or high school education desired a higher quantity of information (76% vs 65%, p<0.001), preferred to receive that information using pamphlets (43% vs 32%, p=0.006) and wanted all the information at the first opportunity (81% vs 67%, p<0.001).
This quality improvement project found that age, gender and education level influenced patient preferences for information quantity, delivery mode and timing of RT education. These findings are promising and support further evaluations to determine a more precise definition of the personal factors that could help to individualize our approach to educating patients receiving RT.
L'utilisation des données démographiques des patients pour adapter les processus d'éducation des patients atteints de cancer permet d'améliorer les résultats pour les patients. Cependant, il existe peu d'informations sur la façon d'adapter avec succès le contenu et la prestation de l'éducation à la radiothérapie (RT). L'objectif de ce projet d'amélioration de la qualité était de décrire les préférences en matière d'information d'un groupe diversifié de patients subissant une radiothérapie et de déterminer si différents processus d'éducation en radiothérapie étaient associés à certaines caractéristiques démographiques des patients.
Un questionnaire d'évaluation des besoins éducatifs, basé sur un outil validé, a été proposé à tous les patients subissant une RT au cours d'une seule journée. Les sections du questionnaire comprenaient des données démographiques et des questions concernant l'importance des sujets liés aux traitements de RT, le mode souhaité de transmission de l'information, la quantité d'information, le moment souhaité pour l'information et la satisfaction de l'information reçue. On a également demandé aux patients de répondre à des questions qualitatives portant sur ce qui fonctionnait bien et ce qui pouvait être amélioré. Les réponses des participants ont été regroupées sur la base de groupes démographiques (âge, sexe, niveau d'éducation) et ont été testées pour détecter des différences et des associations statistiquement significatives.
130 patients ont rempli le questionnaire. Par rapport aux plus de 60 ans, les participants âgés de 50 à 59 ans étaient plus nombreux à penser que les sujets étaient "très importants" (96 % contre 77 %, p<0,001) et à vouloir plus d'informations sur ces sujets (80 % vs 66 %, p<0,001). Les participants âgés de plus de 70 ans étaient plus nombreux à préférer les brochures que ceux âgés de moins de 70 ans (48 % contre 30 %, p<0,047), tandis que les participants âgés de moins de 50 ans étaient plus nombreux à préférer les séances individuelles que ceux âgés de plus de 50 ans (40 % contre 25 %, p<0,038). Les participants de moins de 50 ans étaient moins nombreux à vouloir des informations lors de leur première rencontre avec l'oncologue radiothérapeute que ceux de plus de 50 ans (57 % contre 73 %, p<0,001). Par rapport à la cohorte masculine, les femmes étaient plus nombreuses à estimer que les sujets d'information étaient plus importants (83 % contre 74 %, p<0,0001) et avaient davantage de besoins éducatifs non satisfaits (29 % contre 17 %, p<0,001). Par rapport aux personnes ayant fait des études postsecondaires, les participants ayant fait des études primaires ou secondaires étaient plus nombreux à souhaiter une plus grande quantité d'informations (76 % contre 65 %, p<0,001), à préférer recevoir ces informations sous forme de brochures (43 % contre 32 %, p=0,006) et à vouloir obtenir toutes les informations à la première occasion (81 % contre 67 %, p<0,001).
Ce projet d'amélioration de la qualité a révélé que l'âge, le sexe et le niveau d'éducation influençaient les préférences des patients quant à la quantité d'informations, au mode de livraison et au moment de l'éducation sur la RT. Ces résultats sont prometteurs et soutiennent des évaluations supplémentaires pour déterminer une définition plus précise des facteurs personnels qui pourraient aider à individualiser notre approche de l'éducation des patients recevant une RT.
Patient Communication for Medical Physicists
2021, Journal of the American College of Radiology
A Personalized Patient Teaching Session at the Time of Radiation Simulation May Improve Patient Satisfaction Scores
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Citation Excerpt :
One study showed that providing patients with more intensive written information does not significantly affect satisfaction scores.3 This may related to the fact that not all patients desire the same level of information: patients who are older, male, have a primary lung or rectal malignancy, have more difficulty understanding information, and who have higher “trait anxiety” levels have been shown to desire less information.4 Conversely, several studies have shown that in-person interventions led by trained RT therapy staff are associated with improved anxiety scores and reduced depressive symptoms.5,6
Radiation therapy simulation is an excellent time for patient education. We implemented a comprehensive personalized patient experience-focused (PX) teaching session at the time of simulation and assessed its effect using patient satisfaction scores.
From February 2016 to June 2018, a single PX-trained radiation therapy therapist met patients at simulation to address and resolve all treatment-related questions. Results from a Centers for Medicare & Medicaid Services approved voluntary patient satisfaction tool were used to assess the effect of this intervention, using tools the patients received during the on-treatment period. Scores from patients contacted by the PX therapist were compared with those of noncontacted patients.
For the survey, 1369 patients were contacted (median contact duration, 23 minutes; range, 0-117). Of 732 surveys submitted during this time, 98 were from on-treatment patients (69 contacted, 29 not contacted). The majority of contacted patients and survey responders were women (64% and 62%, respectively), patients with breast cancer (38%, 41%), and patients who had received curative therapy (82%, 69%). Scores from contacted patients were significantly higher for 10 of the 17 questions (registration helpfulness, P = .03; registration wait time, P = .048; facility way finding, P = .03; facility cleanliness, P = .01; treatment staff skill, P = .03; treatment staff concern for questions, P = .003; response to concerns, P = .01; staff worked together, P = .01; overall rating of care, P = .01; and likelihood of recommending care, P = .04) and 4 of the 5 domains (registration, P = .04; facility, P = .03; personal issues, P = .02; overall assessment, P = .002).
Contact by a PX therapist was associated with higher patient satisfaction scores, including areas specifically addressed by the PX teaching session (concerns for questions, response to concerns) as well as other areas (cleanliness, registration wait time).
What matters to you? – Free-text comments in a questionnaire from patients undergoing radiotherapy
2020, Technical Innovations and Patient Support in Radiation Oncology
Most cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory and RT is often associated with unfamiliar procedures in a highly technical environment. The purpose of this study was to explore how patients experience RT and the related processes, as described in free-text comments in a large Swedish survey with questionnaires including items on psychosocial climate and treatment environment.
The data consisted of free-text comments from one open-ended question: “Is there anything else you want us to know” and were analysed using qualitative content analysis.
Of 825 returned questionnaires, 261 contained free-text comments from patients (32%). The hand-written, free-text comments reflected the patients’ experience of the RT process and were abstracted into the four major categories with sub-categories: experiencing the high-tech RT environment, understanding the RT procedures and side effects, dealing with daily life during RT, and the nurses’ role and performance. The categories reflect the patients’ experiences and emphasize how important it is to evaluate what really matters to the patients when changing procedures, practices, and how to minimize disturbances in the patients’ daily lives.
The main conclusions from this study are that the involvement of patients in choosing daily appointment times, providing good information during the RT process to make the patients feel safe, experience and attitude of the staff and respect for the patient’s autonomy are highly ranked values for patients. An implementation of person-centred care may help relieve many of these problems.

View all citing articles on Scopus

: This study was supported by the Dutch Cancer Foundation (grant UVA 2005-3199).

: Conflict of interest: none.

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Clinical InvestigationThe Information Needs of New Radiotherapy Patients: How to Measure? Do They Want to Know Everything? And if Not, Why?

Purpose

Methods and Materials

Results

Conclusions

Introduction

Section snippets

Sample and procedures

Sample

Psychometric characteristics of the IPRP

Information needs

Conclusions

Ann Oncol

Soc Sci Med

Eur J Oncol Nurs

Eur J Oncol Nurs

Lung Cancer

Radiother Oncol

Clin Oncol (R Coll Radiol)

Pat Educ Couns

Effective physician-patient communication and health outcomes, a review

Can Med Assoc J

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

Brit J Cancer

Evaluation and ethical review of a tool to explore patient preferences for information and involvement in decision making

J Med Ethics

Information needs of cancer patients in west Scotland, cross sectional survey of patients’ views

Brit Med J

Cancer patient preferences for communication of prognosis in the metastatic setting

J Clin Oncol

No news is not good news: Information preferences of patients with cancer

Psycho-Oncol

Cancer patients’ coping styles and doctor-patient communication

Psycho-Oncol

Patient preferences for the disclosure of prognosis after esophagectomy for cancer with curative intent

Ann Sur Oncol

Palliative chemotherapy or best supportive care? A prospective study explaining patients’ treatment preference and choice

Brit J Cancer

Desire for information and involvement in treatment decisions. Elderly cancer patients’ preferences and their physicians’ perceptions

J Clin Oncol

Communication and information, the experience of radiotherapy patients

Eur J Cancer Care

Cancer patients’ information needs and information seeking behaviour, in depth interview study

Brit Med J

The patient’s perspective, a qualitative study of acute myeloid leukaemia patients’ need for information and their information-seeking behavior

Support Care Cancer

Patients’ need for information about cancer therapy

OncNurs Forum

Clinical Investigation
The Information Needs of New Radiotherapy Patients: How to Measure? Do They Want to Know Everything? And if Not, Why?