Do radiation oncologists tailor information to patients needs? And, if so, does it affect patients?

Figures & data

Figure 1. Details of the study design and patient flow.

Table I. Coding instrument.

Categories	Information giving about Description	Examples
Disease and diagnosis	The current state of affairs regarding health and the disease of the patient in which the goal is explanation of the disease	Explaining cause and expected course of the disease Prevalence of the disease Discussion of results of diagnostic research
Prognosis	The prognosis of this disease	General prognosis after radiotherapy Factors influencing prognosis Mean time of survival Chance of recurrence if no radiotherapy is given
Radiotherapy and related treatment	Radiotherapy or other interventions for which the radiation oncologist is responsible	Discussing the possible radiotherapy treatment regimens Information on which parts of the body will be radiated How to evaluate the effect of the radiotherapy
Other medical treatments	Medical interventions other than radiotherapy/interventions that are not under the responsibility of the radiation oncologist	Information about chemotherapy and/or surgery Participation in scientific research Different forms of possible treatments Treatments following radiotherapy
The radiotherapy procedure	The practical aspects (the procedures) of radiotherapy	How many radiations the patient will receive The duration of each radiation session How to prepare for radiotherapy
Side effects of the radiotherapy	The possible side effects and consequences of the radiotherapy	Which side effects to expect in the short- and long-term Effect on daily activities during radiotherapy How to control side effects, e.g. by taking medication for nausea
Psychosocial issues	The psychological and financial consequences and the possibility of getting in touch with fellow-sufferers	What the experiences are of other patients undergoing radiotherapy Where to patients can go if he needs (psychological) help Reimbursement of transportation costs
Other information given	Other issues discussed in the consultation	Treatment of another unrelated disease Information about how physical examination in general are carried out (e.g. why you can see less on an ultrasound than on a MRI-scan)
Other conversation that involves no information giving*	Conversation in which information giving is not the goal	Opening the conversation Collecting information Physical examination
Interruptions*	Interruption of the consultation	Phone call Radiation oncologists leaves the room

*These categories are not used to calculate the total time spent on information giving.

Table II. Match between patients’ information needs and the duration of information giving (n = 150).

Domain	Information need	Duration of information giving		Match (%)	Cohen's kappa
		Low N (%)	High N (%)
Total (n = 138)	Low	27 (19.6)	16 (11.6)
	High	52 (37.7)	43 (31.2)	50.8	0.066
Disease (n = 147)	Low	32 (21.8)	12 (8.2)
	High	63 (42.9)	40 (27.2)	49.0	0.087
Treatment (n = 145)	Low	23 (15.9)	10 (6.9)
	High	69 (47.6)	43 (29.7)	45.6	0.050
Procedures (n = 147)	Low	20 (13.6)	10 (6.8)
	High	72 (49.0)	45 (30.6)	44.2	0.029
Side effects (n = 146)	Low	20 (13.7)	6 (4.1)
	High	69 (47.3)	51 (34.9)	48.6	0.066
Prognosis (n = 145)	Low	26 (17.9)	11 (7.6)
	High	68 (46.9)	40 (27.6)	45.5	0.049
Psychosocial (n = 144)	Low	74 (51.4)	13 (9.0)
	High	44 (30.6)	13 (9.0)	60.4	0.087

Low versus high information need: response on IPRP below 4 labeled as a lower information need and responses of 4 and above indicating high information need.

Low versus high information giving: under or above the mean.

Kappa values are interpreted as follows: ‘bad’ (k < 0); ‘small’ (0–0.20); ‘moderate’ (0.21–0.40); ‘fair’ (0.41–0.60); ‘sufficient to good’ (0.61–0.80) and ‘almost perfect’ (0.81–1.00).

Table III. Sociodemographic characteristics of the respondents (n = 155).

	Mean (range)	SD
Age (years)	62.7 (19–87)	12.8
	N	%
Gender
Male	93	60
Female	62	40
Marital status
Married/ steady relation	117	76
No partner	36	23
Children
No children	33	21
Children living at home	23	15
Grown-up children	98	63
Level of education^a
Low	109	70
High	42	27
Employment
Yes	63	41
No	91	59
Ethnicity
Dutch	146	94
Other	8	5
Native language
Dutch	143	92
Other	11	7
Religion
Yes	73	47
No	80	52
Diagnosis
Breast	24	16
Urological^b	46	30
Gynecological^c	13	8
Rectum	18	12
Esophagus	16	10
Lung	12	8
Gastro-intestinal^d	8	5
Other^e	18	12

Due to missing data not all percentages add up to 100%.

^aLow: no education, primary school, lower professional education. High: high school, college or university

^bUrological: bladder, prostate, testis and kidney

^cGynecological: cervix and uterus

^dGastro-intestinal: anus, bile duct, colon, stomach, pancreas

^eOther: skin, non-Hodgkin lymphoma, other

Table IV. Patients’ information needs.

Information need	N	Mean (SD)	Percentage of patients with low information needs
IPRP total score	138	4.21 (0.75)	31%
Information domain
Disease	147	4.11 (0.92)	30%
Treatment	145	4.19 (0.81)	23%
Procedure	147	4.38 (0.78)	20%
Side effects	146	4.41 (0.75)	18%
Prognosis	145	4.32 (0.89)	26%
Psychosocial	144	3.45 (1.13)	60%

Table V. Time spent on information giving per domain.

Domain	Time spent on information giving^a
	Mean (SD)	Range
Total	16.4 (7.8)	0.9–45.4
Disease	3.6 (3.82)	0–23.5
Treatment	2.8 (3.08)	0.2–30.0
Procedures	4.3 (3.0)	0–21.9
Side effects	3.2 (2.3)	0–15.5
Prognosis	0.5 (0.8)	0–4.9
Psychosocial	0.2 (1.0)	0–12.1

^aTime in minutes.

Figure 2. Box plot showing time (in seconds) spent on information giving per radiation oncologist.

Table VI. Patient-reported outcome measures.

Patient-reported outcomes	Mean (SD)	Range
Satisfaction	85.95 (10.19)	54–100
Anxiety	4.90 (4.26)	0–16
Health status	72.72 (19.67)	8.33–100
Self-efficacy	44.59 (5.95)	24–50

For satisfaction and global health scores could range between 0 and 100.

For anxiety scores could range between 0 and 21.

For self-efficacy scores could range between 10 and 50.

Table VII. Hierarchical multiple regression analyses for tailoring of information for patients’ information needs about procedures.

	Patient-reported outcomes
	State anxiety		Global health
Variables	Standardized β	p	Standardized β	p
Step 1
Match	0.25	0.01*	20.24	0.02*
Explained variance (%)	6%	0.01*	6%	0.02*
Step 2
Match	0.13	0.16	20.13	0.18
Gender	0.03	0.72	20.07	0.41
Age	0.03	0.75	20.03	0.76
Educational level	20.08	0.37	0.26	0.01*
Trait anxiety	0.50	0.00*	20.45	0.00*
Health literacy	20.12	0.25	0.07	0.49
Added variance explained (%)	32%	0.00*	34%	0.00*
Total variance explained (%)	39%	0.00*	40%	0.00*

*p<0.05.