Synthesis of findings

The search procedure yielded ten papers, which are summarised in Tables 1 and 2. It was inappropriate to combine findings statistically to produce meaningful outcomes. This was partly due to the small number of quantitative studies identified for inclusion into the review. Primarily, the assessment of the included studies revealed there to be many methodological differences that existed between the studies. This made it difficult to pool studies to determine the effect of perceptions on treatment selection. Therefore, a qualitative synthesis of the findings was undertaking with studies being grouped according to treatment modality and those factors affecting decision-making. Statistical findings from the quantitative studies were used to support the observed findings from the qualitative studies.

5.1. Beliefs underpinning treatment selection for localised prostate cancer

5.1.1. Radical prostatectomy

Patients' beliefs and other influences in selecting to undergo a radical prostatectomy were clearly reported in nine of the studies [27-35]. Many of the patients perceived their cancer as a localised problem and that the most tangible and definitive method of curing or preventing the disease from spreading was to remove the tumour [27-29, 31, 35]. These findings were also replicated in three of the quantitative studies, which reported that beliefs about the effectiveness of surgery and complete tumour removal were statistically associated with selecting surgery [33-35]. Surgery would also allow for surgeons to be more informed about the nature and extent of the cancer and would provide the patients with more information about their disease [27, 28]. Surgery was considered to have the best evidence base in terms of its efficacy in combating cancer compared to other curative treatment options [31, 32]. Overall, patients believed surgery to be the best and most effective form of treatment. This corresponds with current treatment rates, which show that the majority of patients with LPCa opt for surgery [36].

5.1.2. External beam radiation therapy and brachytherapy

External beam radiation therapy (EBRT) was regarded by most patients as being an inferior treatment option to a radical prostatectomy. This was based on their belief that EBRT provided uncertainty surrounding its ability to cure their cancer [27, 28, 30, 31] through treatment administered externally to the body. Unlike a radical prostatectomy, EBRT was believed to disadvantage the patient by being time-consuming and disruptive to daily life with severe consequential side-effects [27, 28]. Interestingly, some of these side-effects were mistaken for side-effects associated with chemotherapy (e. g. , hair loss, weight loss, vomiting) [27, 28, 30]. It appeared that when patients selected EBRT as their preferred treatment, it was to avoid the negative effects of surgery, i. e. , being less invasive and resulting in fewer side-effects [31, 35]. These beliefs were similar to those held by patients who selected bra-chytherapy as their preferred treatment. However, like a radical prostatectomy, brachyther-apy was believed to provide a 'direct' and, therefore, more effective and convenient form of treatment to cure their cancer [31, 34].

5.1.3. Active surveillance / watchful waiting

The terms 'watchful waiting' were used in some of the papers along with the other active treatment options. Watchful waiting usually refers to a less intense management plan where palliative care is usually provided. These options were rarely considered by patients as a management option for their cancer. They were typically rejected due to patients' fear about the cancer spreading [31, 33] and their need to be "doing something" active to combat their prostate cancer [28, 31]. Holmboe and Concato [31] suggested that other possible explanations for patients rejecting watchful waiting included fear of death or the inability to monitor cancer progression. Patients who opted for active surveillance perceived their cancer as 'a very small growth' and a common disease among men as they get older. These men were accepting of the uncertainty surrounding their disease progression and believed it would be best to endure the severe side-effects of curative treatment only when it was evident that treatment was required [37]. However, this willingness to accept active surveillance as a management option appeared to occur in men whose urologists advocated the view that the disease was not severe and would progress slowly [37].

Study Authors, year, & study

Design

Characteristics of

Major findings

Ref location

sample

[27] Denberg et al. (2006)

Perspective cohort

20 men newly

40% perceived surgery as a

Denver, USA

(follow-up 6-8 months)

diagnosed with LPCa

definitive treatment

using semi-structured

considering treatment

Surgery offered crucial

interviews

options

knowledge about tumour

Age range 53-80 years

55% perceived surgery as

70% (white); 25%

undesirable regarding

(African American); 5%

invasiveness

(Latino)

[28] O'Rourke (1999)

Perspective cohort

18 men newly

Couples believed cancer is

North Carolina, USA

(follow-up 3 & 12

diagnosed with LPCa

only curable through

months) using couple &

who have made a

surgery

individual semi-

treatment decision

Perceived uncertainty

structured interviews

18 spouses recruited

about radiotherapy

Mean age 67.6 (range

regarding efficacy &

52-78 years) (patient)

outcome

Mean age 62.1 (range

Men more concerned

49-74 years) (partner)

about side-effects than

13% white (patient),

wives

5% African American; 72% white, 28% African American (spouse)

Study

Authors, year, & study

Design

Characteristics of

Major findings

Ref

location

sample

[29]

O'Rourke & Germino. (1998)

Retrospective cross-

11 men diagnosed with Surgery perceived as a first

North Carolina, USA

sectional study using

LPCa, who have made a

line choice

unstructured focus

treatment decision

Prior bias toward surgery

groups

6 spouses recruited

due to perceived

Age range 58-72 years

association with cure

(patients)

Radiotherapy perceived

Age range 51-64 years

inferior to surgery due to its

(spouses)

efficacy & side-effects

99% white; 1% African

American

[30]

Steginga et al. (2002)

Cross-sectional study

108 men diagnosed

47% described other

Queensland, Australia

using semi-structured

with LPCa considering

patients' treatment

interviews

curative treatment

experiences used in their

options

decision-making

Mean age 62 years

34% held lay belief that

(range 39-80 years)

surgery was the best way to

Ethnicity not specified

cure their cancer

12% were uncertain about

radiotherapy as a way to

cure their cancer

[31]

Holmboe & Concato. (2000)

Cross-sectional study

102 men newly

Majority influenced by

New Haven, USA

using interviews with

diagnosed with LPCa,

external information (i.e.,

open-ended questions

who have made a

30% for physician

treatment decision

recommendation)

Mean age 66.4 years

Classified likes & dislikes of

Majority white (89%)

treatments

Removal of tumour &

evidence of efficacy as main

likes for surgery

Fear of future

consequences was the most

common reason to reject

watchful waiting

[37]

Davison et al. (2009)

Retrospective cross-

25 men with low-risk

Men perceived their cancer

Vancouver, Canada

sectional study using

prostate cancer on

as a common disease &

interviews with semi-

active surveillance

exaggerated the potential

structured interviews

Mean age 66 years

incidence

(range 48-77 years)

Realised treatment might

Majority white (92%);

be necessary, but viewed as

8% South Asian

"a grey zone"

Table 1. Description of the Qualitative Studies included in the Systematic Review

Table 1. Description of the Qualitative Studies included in the Systematic Review

Study ID reference

Authors, year, & study location

Design

Characteristics of sample Major findings

Hall et al. (2003) Retrospective cross- 351 men with LPCa treated with 42.9% brachytherapy patients &

Virginia, USA sectional study using self- surgery or brachytherapy 97.5% radical prostatectomy report questionnaires Mean age 62±5 years (radical patients chose treatment based on developed from literature prostatectomy), 66±8 years evidence shown to cure the cancer review & clinical (brachytherapy), 70±7 years Side-effects were an important impressions (combination of brachytherapy & motivator radiotherapy) Urologists were the most

Ethnicity not specified important source of information and a major factor in decisionmaking process

Zeliadt et al. (2010) Cross-sectional study 198 newly diagnosed patients USA using self-report considering surgery only &

questionnaires developed patients considering other from preliminary focus treatment options groups & cognitive Mean age 63 years interviews 72% white, 11% black, 16%

Hispanic/Asian (surgery), 68% white, 26% Black, 6% Hispanic/ Asian (other options)

Treatment efficacy influenced preference for surgery Personal burden influenced nonsurgical options

Gwede et al. (2005) Florida, USA

Cross-sectional study using questions derived from previous study

69 men diagnosed with LPCa, who have made a decision about treatment

Mean age: 57.7 years (range 39.6-71.1) (surgery), 65.2 years (range 45.7-89.2) (brachytherapy) 86.5% (surgery), 97% (brachytherapy) white

Cure and complete tumour removal were the main motivations for surgery (74%) Brachytherapy related to quality-of-life issues

Teramoto et al. 2006 Kamogawa, Japan

Cross-sectional study using self-report questionnaires

51 men diagnosed with LPCa treated with radical prostatectomy or external beam radiation therapy Overall mean age: 68.2 (range 56-75 years) Japanese sample

Physician was the major factor influencing treatment decisions in both treatment groups (>90%) Family and others was a more important factor for patients undergoing surgery than patients undergoing radiation therapy Surgery was desired for cancer control

Radiation therapy favoured concerning side-effects

Table 2. Description of the Quantitative Studies included in the Systematic Review

5.1.4. The role of urologists and partners in informing patient beliefs

The recommendations made by urologists emerged in many of the papers [28, 29, 31-33, 37] as being influential in shaping patients' beliefs regarding their treatment choice. A high percentage of patients (48-65%) said they would selected the treatments recommended by their urologist [30, 32]. Consequently, seeking a second opinion was unnecessary serving only to delay treatment and provide potentially more conflicting information to process [27, 28].

Partners, who often experience considerable emotional distress themselves on hearing the diagnosis [25, 38], have also been found to exert an important influence on patients' beliefs. Three studies reported the role of the partners to be a source of information or a mediator in helping men to process their treatment information [27, 32, 34]. However, it was also reported in two studies that, ultimately, it is the patients themselves who reported ownership of their treatment decision [29, 37].

5.1.5. The role of patients' information seeking behavior in informing beliefs

Another major factor influencing patients' beliefs was their own information-seeking behaviour. Patients and their partners are often actively engaged in learning about their treatment options, side-effects and the background of their urologists [29]. The evidence suggested that they made use of a variety of resources, including health care professions (HCPs) (i. e. , urologists, radiation oncologist), the internet, books, magazines, friends and family [27, 29, 30, 32, 34, 37]. Processing such large amounts of advice and potential contradictory information was suggested to be an explanation for the misconceptions about treatments reported by the patients (i. e. , associating the effects of chemotherapy with radiotherapy) [27, 30].

5.1.6. The role of other patients' treatment experiences in informing patient beliefs

In four studies, there was evidence that patients [27, 28, 30, 33] and their partners used the experiences of other people with cancer in their decisions about treatment. Denberg et al. [27] described that these experiences influenced patients' beliefs regarding LPCa, its treatment and treatment side-effects. Steginga et al. [30] reported that 47% of men described considering other people they knew (not just those with prostate cancer), who had negative experiences with cancer or cancer treatment, in their decision-making. O'Rourke [28] reported that comparisons with other patients, who had a positive outcome from treatment, were mostly related to surgery and that comparisons were usually made between friends and family members, who had undergone surgery and were making a good recovery. It has been suggested that patients may pay more attention to the experiences of other patients with cancer than to the risk information presented to them by their urologists and specialist nurses [27]. The reliability of their findings was supported by the quantitative findings of Zeliadt et al. [33], who reported a statistically significant association between the experiences from other patients and treatment selection for patients who only considered surgery as a viable treatment.

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