Disease insight and treatment perception of men on active surveillance for early prostate cancer


Roderick van den Bergh, Erasmus MC, Room NH-227, PO Box 2040, 3000 CA Rotterdam, the Netherlands.
e-mail: r.vandenbergh@erasmusmc.nl


Study Type – Survey (prospective cohort)
Level of Evidence 1b


To investigate the levels of knowledge of prostate cancer and the perception of active surveillance (AS) in men on AS, as AS for early prostate cancer instead of radical treatment might partly solve the over-treatment dilemma in this disease, but might be experienced as a complex and contradictory strategy by patients.


In all, 150 Dutch men recently diagnosed with early prostate cancer participating in a prospective protocol-based AS programme (PRIAS study) received questionnaires, including a 15-item measure on their general knowledge of prostate cancer, and open-ended questions on the most important disadvantages and advantages of AS, and on the specific perception of AS. We assessed knowledge scores and explored potentially associated factors, the stated (dis)advantages and specific perceptions.


The questionnaire response rate was 86% (129/150). Participants provided correct answers to a median (interquartile range) of 13 (12–14) of 15 (87%) knowledge items. Younger and higher educated men had higher knowledge scores. In line with a priori hypotheses, the most frequently reported advantage and disadvantage of AS were the delay of side-effects and the risk of disease progression, respectively. Specific negative experiences included the feeling of losing control over treatment decisions, distress at follow-up visits, and the desire for a more active participation in disease management. No conceptually wrong understandings or expectations of AS were identified.


We found adequate knowledge of prostate cancer levels and realistic perceptions of the AS strategy in patients with early prostate cancer and on AS. These findings suggest adequate counselling by the physician or patient self-education.


active surveillance

PRIAS, Prostate Cancer Research International

Active Surveillance


Medical Ethical Committee


interquartile range.


Active surveillance (AS) is a new treatment strategy for early prostate cancer, consisting of initially withholding radical treatment. Instead, the disease is strictly monitored and active therapy with curative intent is considered as soon as progression occurs. By delaying the side-effects of surgery or radiotherapy in some, and avoiding it completely in others, AS has the potential to partly solve the overtreatment dilemma, which is mainly a result of the over-diagnosis caused by screening [1,2].

Better patient knowledge and understanding of disease and treatment have been reported to be associated with better self-management and coping, with improved patient satisfaction with their care, and increased adherence [3–7].

AS can be perceived as a complex or even contradictory treatment strategy by patients, especially by men with insufficient knowledge of their disease. Disease insight and perception of the treatment strategy might be underexposed but important aspects of treatment satisfaction in patients on AS.

We assessed the level of knowledge of prostate cancer and associated factors, and we explored perceived advantages and disadvantages of AS and specific perceptions of this treatment strategy in a group of patients with early prostate cancer on AS.


All patients included in the present study participated in the protocol-based AS programme of the international prospective observational Prostate Cancer Research International: Active Surveillance (PRIAS) study [8]. Men are eligible for the PRIAS study if they have a diagnosis of adenocarcinoma of the prostate with a PSA level of ≤10.0 ng/mL, a PSA density (PSA divided by prostate volume) of <0.2 ng/mL/mL, T1c or T2 disease, and one or two positive prostate needle biopsy cores, with a Gleason score of 3 + 3 = 6 or more favourable. After the diagnosis and consultation with the urologist, a shared decision is made on the initial treatment strategy. If AS is selected and if a patient subsequently wants to participate in the PRIAS study, written informed consent is provided. The first 2 years of surveillance consist of a PSA measurement every 3 months, digital rectal examination every 6 months, and standard repeat prostate biopsies after 1 year. The Medical Ethical Committee (MEC) of the Erasmus University Medical Centre approved the PRIAS study (MEC number 2004–339), as did the MECs of the participating 12 non-university hospitals, depending on the local regulations. PRIAS is coordinated from the Rotterdam section of the European Randomized Study of Screening for Prostate Cancer [9].

Between May 2007 and May 2008, all 150 Dutch men with a recent (≤6 months) diagnosis of prostate cancer who were included in the PRIAS study, received a health and quality-of-life questionnaire by mail at their home address. If the questionnaire was not returned within 1 month, patients were reminded once by telephone. The questionnaire contained measures for psychological, demographic and other variables. A second follow-up questionnaire was sent at 9 months after diagnosis to those men who had returned the first.

The patients’ knowledge of prostate cancer was assessed using a 15-item measure with three response options each (‘True’, ‘not true’, don’t know’). For a correctly provided answer, 1 point was added to the total ‘Knowledge of prostate cancer’ score. The total score range was 0–15, with 15 indicating maximum knowledge of prostate cancer. The measure was based on a 20-item ‘knowledge of prostate cancer measure’ that was previously used to study the effectiveness of an information leaflet on prostate cancer screening published by the Dutch Cancer Foundation (‘KWF Kankerbestrijding’), from which five irrelevant questions in an AS setting were excluded. The measure was similar in size and type of questions to other ‘knowledge of prostate cancer’ measures used in other studies [10–12]. There was a conceptual overlap with items used in these studies in eight of the 15 items.

Advantages of AS over other treatment options as perceived by participants were assessed using one open-ended item (‘Which are for you the most important advantages of AS? Start with the most important aspect.’) with space for three possible responses. A similar item was included on the disadvantages of AS.

Specific perceptions of AS were extracted from the open comments section at the end of the questionnaire (‘This is the end of this questionnaire. If you have any comments, please write them down below. Also, if any special personal circumstances influenced your response to the items in this questionnaire please mention these below.’). Completing this item was optional. Comments provided in the second questionnaire (9 months after diagnosis) were also included in this analysis, and was the only item from this follow-up questionnaire that was used in the current study.

Educational level was assessed using one item with six response options, and was divided into two groups defined as ‘low education’ (primary, secondary education, and/or high school) or ‘high education’ (professional education, college, and/or university). Employment status was defined as ‘employed’ or ‘otherwise’. Civil status was defined as ‘married/living together’ or ‘otherwise’.

Medical information (PSA level, clinical stage, number of positive biopsies, age) and hospital type were derived from the PRIAS study database. Clinical disease stage was defined as ‘T1C’ or ‘T2’. Age was categorized into <60, 60–70, and >70 years. Hospital type was defined as ‘university/specialized’ if a patient was under AS in an academic or specialized oncological centre, or as ‘other hospital’.

Scores on knowledge were assessed and related to educational level, employment status, civil status, age and hospital type. We hypothesized that men with a high educational level, employed, who were married, young, and under AS in a university hospital would have higher scores on knowledge of prostate cancer, with educational level being the strongest relationship. Variables found to be statistically significantly associated in a univariate regression analysis were entered in a multivariable model. Hypotheses on the sizes and directions of the potential relationships between these variables were based on published reports (educational level, civil status and age) [12,13] and on logical reasoning (employment status, hospital type) that these were potentially relevant in this patient group.

Advantages and disadvantages, and specific perceptions mentioned by participants were extracted, grouped and counted independently by two of the authors (R.C.N.vdB., M.L.E.B). We hypothesized that the most frequently reported advantage included the delay or avoidance of side-effects of radical treatment, and that the most frequently reported disadvantage included fear of disease progression. In statistical testing, P < 0.05 was considered to indicate statistical significance.


Of the 150 questionnaires sent, 129 (response rate 86%) were completed and returned at a median (interquartile range, IQR) of 2.4 (1.3–3.9) months after diagnosis. Table 1 presents the general, medical and demographic details of the 150 men. The median (IQR) age was 64.6 (60.2–70.4) years; 92% were married or living together. Information on ethnicity was not available in the study, but based on surnames of participants, we estimated our cohort to be >95% of Dutch origin.

Table 1. 
General, medical and demographic characteristics of the 129 patients
VariableMedian (IQR) or n (%)
Age, years64.6 (30.2–70.4)
Months from diagnosis to completing first questionnaire2.4 (1.3–3.9)
PSA, ng/mL5.7 (4.6–7.0)
Clinical stage 
 T1C91 (70.5)
 T238 (29.5)
Number of positive biopsies 
 179 (61.2)
 250 (38.8)
 Low86 (67.2)
 High42 (32.8)
 Yes50 (39.7)
 No76 (60.3)
 University/specialized61 (47.3)
 Other68 (52.7)
Civil status 
 Married/living together 119 (92.2)
 Other10 (7.8)

Table 2 presents the 15 items on prostate cancer knowledge used in the study, answers considered correct, and percentages of men answering correctly. Participants answered a median (IQR) of 13 (12–14) items correctly (87%); 11 (9%) answered all 15 items correctly. Despite overall high scores, more than half the men thought that metastasized prostate cancer is still curable while in reality this is impossible; >30% thought that prostate cancer does not recur after radical treatment while there is a relevant chance of disease recurrence, and almost 30% thought that treating early prostate cancer does not cause any urinary incontinence, while this is an important side-effect of primary treatment, or thought that prostate cancer is the second deadliest cancer, while the prognosis of prostate cancer in general is mainly favourable.

Table 2.  Question items on prostate cancer in general, used in this study, answers considered correct, and percentage of the study population answering correctly. For each correct answer, 1 point was added to the total ‘Knowledge of prostate cancer’ score (score 0–15)
QuestionAnswerAnswered correctly, %
1. The prostate is situated at the bottom of the abdominal cavityTrue89.1
2. The risk of being diagnosed with prostate cancer decreases with increasing ageFalse94.6
3. Prostate cancer is more common in men aged 70 than in men aged 40True89.1
4. Prostate cancer may lead to deathTrue83.7
5. Most men diagnosed with prostate cancer will not die of prostate cancerTrue82.2
6. If prostate cancer has metastasized, curative treatment is no longer possible in most casesTrue44.2
7. The treatment of early detected prostate cancer may cause unwanted incontinenceTrue73.6
8. After surgery for prostate cancer, side-effects may arise, such as erectile problemsTrue95.3
9. Treating prostate cancer through radiation therapy does not cause any side-effectsFalse83.7
10. After treatment, prostate cancer stays away in all casesFalse69.0
 11. A man may have prostate cancer, even though he never has symptomsTrue96.9
12. If prostate cancer is found in an early stage, it may be treated wellTrue96.9
13. Prostate cancer is the second most deadly type of cancerFalse71.3
14. Urinary problems in elder men are most commonly caused by a benign enlargement of the prostateTrue85.3
15. It may occur that prostate cancer is detected that would never have caused any problemsTrue87.6

Table 3 presents the univariate and multivariable regression analysis of ‘knowledge of prostate cancer’ score. In univariate regression analysis, higher educational level, married status and younger age were significantly (P < 0.05) associated with a higher knowledge score. On multivariable analysis, educational level and age remained statistically significantly related with knowledge of prostate cancer, with the strongest relation for educational level (β = 0.209; P = 0.016).

Table 3.  Univariate and multivariable analysis of factors associated with the knowledge of prostate cancer score
 β, P
Educational level (low vs high)0.256, 0.0040.209, 0.016
Employment status (employed vs other)0.075, 0.407–, –
Civil status (married/living together vs other)−0.176, 0.0450.132, 0.124
Age at diagnosis (<60, 60–70, >70 years)−0.235, 0.007−0.197, 0.022
Hospital type (university/specialized vs other)0.054, 0.544–, –

Table 4 presents the advantages and disadvantages of AS mentioned by participants. A first, second and third advantage were provided by 120 (93%), 51 (40%) and 20 (16%) of the 129 respondents, respectively. Nine (7%) men did not provide any advantage of AS. A first, second and third disadvantage were provided by 103 (80%), 29 (22%) and 7 (5%) of the 129 respondents, respectively; 26 (20%) did not provide any disadvantage of AS. Significantly more men failed to provide any disadvantage than any advantage (P < 0.01).

Table 4.  Advantages and disadvantages of AS mentioned by participants; total n (%) of the study cohort (more than one answer could be given by any one participant
CategoryN (%)
  1. No advantage was mentioned by 7%, no disadvantage was mentioned by 20% (P < 0.01).

Advantages of AS
Delay of any side-effects due to physical damage after radical treatment such as incontinence and impotence, so that quality of life and lifestyle are not altered80 (62)
Delay unnecessary radical treatment (no specific reason mentioned)42 (33)
Insight in the clinical behaviour of the disease by frequent check-ups and by doing so buying time for the most appropriate decision on treatment23 (18)
No burden and risks of stressful treatment and hospital admission15 (12)
Better treatment options may be available in the future2 (2)
Family situation did not allow for radical treatment1 (1)
Contribution to scientific research1 (1)
Disadvantages of AS
Risk of unfavourable consequences on disease status, such as clinical stage progression or the development of metastases39 (30)
Uncertainty and distress (no specific reason mentioned)25 (19)
Frequent check-ups, including 3 monthly PSA tests, and yearly bothersome prostate biopsy13 (10)
Psychological burden of carrying ‘untreated’ prostate cancer and being a patient13 (10)
AS is merely a delay of radical treatment instead of avoidance6 (5)
Contradiction of waiting while having been diagnosed with cancer6 (5)
AS protocol may not be not adequate for the timely detection of progression2 (2)
Risk that nerve-sparing surgery is no longer possible in the future1 (1)

The most frequently reported advantage of AS included the delay or avoidance of any side-effects of radical treatment, with or without stating the specific reason for being able to continue a normal lifestyle. The most frequently reported disadvantage of AS included the potential risk of disease progression, resulting in uncertainty and distress.

Of the 129 respondents, 39 (30%) provided comments in the ‘open comments’ section at the end of the baseline questionnaire, and 52 (49%) in the comments section of the 106 available follow-up questionnaires. No conceptually wrong perceptions were identified. Most comments could be assigned as related to the treatment decision, to prostate cancer as a disease, and to AS as a treatment strategy. Table 5 presents the specific illustrative statements of 17 different patients.

Table 5.  Statements made by 17 men with early prostate cancer on AS, related to the treatment decision, to prostate cancer as a disease, or to AS as a treatment strategy, and patient details
StatementAge, yearsEducationMonths from diagnosis
Treatment decision-related
Confidence in putting the treatment decision in the hands of the physician:
‘Because I am a layman only, my choice for active surveillance is mainly based on my confidence in my treating urologist, the decisions he makes, and the (active surveillance) follow-up protocol.’57high4
Feeling of losing control over treatment decision:
‘I received little to no advice on the treatment-options for my disease; the choice for AS had actually already been made by my urologist.’55low0.6
‘Living with prostate cancer is something you have to learn. I feel I am handed over to the medical world. Due to a lack of knowledge, it is very hard for me to make decisions on my own.’55low9
Important role of a patient’s spouse:
‘At part 1 of the questionnaire, WE felt unable to give an adequate answer.’62low8
Prostate-cancer related
Varying levels of anxiety and distress due to the diagnosis early prostate cancer:
‘I am not sure whether I am a “real” cancer patient, as my PSA fluctuates somewhere around 6 and only a few malignant cells have been found.’75high9
‘It doesn’t help to worry about these things. So we just continue on the path we have chosen.’70low9
‘I am depressed, and I am using medication. I am afraid of having cancer at other sites in my body as well, in my abdomen, etc.’49low0.3
Unexpected side-effects of the diagnosis:
‘In general, the knowledge of having prostate cancer isn’t causing too much trouble, however, unintentionally, it does influence my sexual interest, which seems to have decreased since the diagnosis.’57low9
Other events overshadowing the impact of the diagnosis prostate cancer:
‘(my experience of prostate cancer) is strongly influenced by the fact that I have lost my wife recently due to the results of pancreatic cancer.’71high4
AS strategy related
Wish to be in control over the disease:
‘Because my PSA kept rising during the last three measurements, I am thinking of getting a PSA test earlier then scheduled according to the AS protocol.’61low9
‘Whenever the PSA level will reach 10.0 ng/mL, I will quit AS and switch to radical treatment.’64high9
Difficulties in monitoring prostate cancer during AS:
‘I do not understand why PSA values vary so much, could this be related to dietary/lifestyle factors?’60high9
The possibility of changing from AS to other treatment options:
‘I feel well, also physically. Life is still a challenge for me. My religion plays a major role in this. The thought of being under close surveillance for my disease with the possibility of switching to radical treatment when this is necessary is very comforting.’76low8
The rise or fall of the PSA values
‘Because the PSA value has been rising over the last three measurements, I am increasingly worried.’55low1
‘As the last 2 measurements clearly showed a lower PSA value, I have become more positive on expectant management, although deep inside the anxiety remains.’55low9
‘Every time my PSA is measured, I am very stressed.’63unknown9
Burden of the intensive follow-up regimen:
‘The prostate biopsies are painful investigations and have side-effects afterwards. I am reluctant to undergo this again, especially since the PSA value is not rising’.62low3


We found an adequate knowledge of prostate cancer and a realistic perception of the treatment strategy of AS in a group of men with early prostate cancer participating in a prospective AS study, with highly educated and especially younger men having highest knowledge scores. Only a few deficiencies in comprehension of background and treatment of prostate cancer, and in the treatment strategy of AS, were identified.

To our knowledge, this is the first study to measure knowledge of prostate cancer in men on AS, and that explored specific patients’ expectations and perceptions of this treatment strategy. The median knowledge score of 13 of a maximum of 15 might be considered as adequate, although there is no reference for what constitutes ‘adequate knowledge’ and our study design did not allow for direct comparisons with other patient cohorts receiving other treatments. The incorrectly answered questions suggest that these patients might expect somewhat too much of the possibilities and results of radical prostate cancer treatments. Besides the lack of any association of knowledge with employment status or hospital type, the size and direction of correlations of factors with knowledge were in line with a priori hypotheses.

The most frequently mentioned advantages and disadvantages of AS by participants were also in line with the authors’ hypotheses. Our finding that significantly more men provided any advantage of AS than any disadvantage, could be caused by the fact that the advantages of AS might be more emphasized than disadvantages in patient-physician discussions at the moment of treatment decision or in the patient information provided, that these are simply remembered better by patients, or that this is a result of a selection bias. Men who more intensively experience the disadvantages of AS might tend to choose another treatment option earlier. No conceptually wrong (dis)advantages were reported, although ‘Better treatment options may be available in the future’ might not be a realistic consideration.

Various patient-specific positive and negative perceptions of the treatment decision, the diagnosis of early prostate cancer, and the treatment strategy of AS were identified. Again, no conceptually wrong ideas or expectations were identified.

We previously found no evidence for an association of anxiety and distress levels with disease knowledge in men on AS [14]. However, men with less knowledge of prostate cancer might be more confused by the treatment strategy of AS. Other factors such as physician attitude and advice might be more decisive in the eventual choice for and perception of AS [15,16]. We believe that especially in this specific patient group that is living with ‘untreated’ cancer, adequate knowledge of prostate cancer and the treatment strategy of AS is essential to understand the advantages and disadvantages of expectant management when compared to radical therapies for localized prostate cancer, such as surgery or radiotherapy. Reasons for the adequate knowledge of prostate cancer and realistic perceptions of AS found in our study (even with the same protocol being applied in different hospitals) remain unknown, but might include counselling by the physician, patient self-education, or a selection bias of men with adequate knowledge choosing AS earlier than men with less knowledge.

Various groups have measured knowledge of prostate cancer in different cohorts [10–12,17–19]. Disease knowledge levels were found to be associated with important decisions such as participation in screening programmes [10]. Our finding that younger and better educated men had higher knowledge of prostate cancer scores is in line with other reports [12,17]. Socio-economic group and ethnicity have also been reported to be associated with knowledge levels [18,19], but our study design did not allow for analysis of these variables.

Denberg et al.[20], after interviewing 20 men, found that treatment decisions in men with localized prostate cancer were not uncommonly based on misconceptions and anecdotes, instead of on realistic deliberations on survival and the risk of side-effects. This is in contrast with our findings.

Limitations of the present study include the use of an unvalidated measure of prostate cancer knowledge. Attempts to develop a reliable and valid questionnaire to test prostate cancer knowledge have been reported, but the use of these measures seems limited [21]. A recent study by Deibert et al.[12] used a self-designed measure, as was done in our study. Second, our study design did not include other patient cohorts receiving other treatments for prostate cancer, making comparisons impossible. Third, the optional type of items we included on (dis)advantages and on specific perceptions might have limited the value of the response.

A strength of the study is that it is the first to evaluate disease knowledge and (dis)advantages of AS, and potential misunderstandings about AS in men with early prostate cancer on AS. Furthermore, extensive questionnaires were used, with a high response rate, completed with no help from the study team. Finally, the study was conducted within the controlled environment of the prospective PRIAS study.

Future research should further clarify the role of knowledge of their disease in men with prostate cancer, and its relation with decisions to stop AS that are not based on the protocol should be investigated longitudinally [22]. The development of a standardized and validated knowledge of prostate cancer measure might also be useful.

In conclusion, this is one of the first studies to provide an insight into the thoughts and feelings of patients on AS for early prostate cancer. Patients recently diagnosed with early prostate cancer who participated in a prospective AS programme had an adequate knowledge of their disease and reported realistic expectations of AS. Although true misconceptions on prostate cancer or on AS were not identified, various factors that influence the personal perception of AS were reported. Our findings suggest counselling by the physician or patient self-education was adequate.


The authors to thank all 129 patients for their participation. Sources of support: Prostate Cancer Research Foundation (SWOP) Rotterdam, the Netherlands.


None declared.