Prostate Cancer (PC) is the most common type of cancer among men in Sweden, with 9678 new cases in 2013 [1] . The disease often develops slowly and is confined to the prostate gland. When the tumour is large enough to pinch the urethra it can cause urinary problems and/or affect sexual function. Other symptoms of PC can include skeletal pain and fatigue [2] . One of a number of treatments for PC is External Beam Radiotherapy (EBRT), which allows high local control relative to the delivered dose.

The daily lives of men with PC are strongly influenced by learning of the diagnosis, living with the symptoms, undergoing treatments, and experiencing side-effects [3] - [5] . The side-effects of EBRT include gastrointestinal, genitourinary, or erectile dysfunction [3] [6] [7] . Pain, fatigue, and existential concerns add to the distress these patients live with [2] , and the effects of PC can also influence the Health-Related Quality of Life (HRQOL) of the patients’ partners and their whole family [8] [9] . Surveys have used Patient-Reported Outcome Measurement (PROM) questionnaires to assess HRQOL among men who have been treated for PC [3] [6] [8] . However, it is not certain whether the closed-ended questions in such questionnaires sufficiently capture the patients’ experiences of HRQOL or if there are other important HRQOL-related dimensions which such questions do not address.

There is an ongoing discussion about the advantages and disadvantages of including open-ended items in a questionnaire. Some questionnaires have included open-ended questions to elicit feedback and to gain insight into how to analyse the other answers [10] [11] , but also to get more information about patients’ experiences of cancer care and how this care could be improved towards a more person-centred approach [12] [13] .

There are, however, a number of problems with the use of open-ended questions. They are expensive to produce and to score; they are not standardized; and it is difficult to estimate how many participants (10% to 70% in published studies [12] - [16] ) will take the opportunity to provide comments on such questions. Open-ended questions also have technical constraints in relation to handwriting, grammar, long words, and the amount of space available to write in. Respondents’ level of education, interest in the survey, and ability to articulate may also affect their written comments [11] [17] . Analysis of such data also requires considerable resources and may provide important information about supplementary explanations to the answers in the questionnaires.

Our ongoing HRQOL studies conducted over the past 15 years have involved the collection of a large sample of PROM including HRQOL data [8] [18] [19] . In our PROM-questionnaire, men diagnosed with prostate cancer had the opportunity to write anything they felt important to describe or clarify in the general open-ended question. The open-ended question has never previously been explored in this population. The aim of this study was therefore to report the extent of use of open-ended questions and to describe what patients express when responding to such questions in a PROM-questionnaire.

During the study period 372 (41%) of the participants had responded at least once to the open-ended question, corresponding to 17% of the 4443 returned questionnaires. Nearly half (n = 168) of the participants wrote one

comment, and the rest two to seven comments during their years of participation in the study (Table 1). Compared to non-participants at baseline, the participants were younger (64.7 ± 6.1 vs. 65.8 ± 6.1, p = 0.006) and more often lived with partners (83% (n = 310) vs. 78% (n = 412), p = 0.011; data not shown). The 747 handwritten comments were between one and 101 words long. Our overall impression from the men’s handwritten comments was that they perceived the open-ended question as an opportunity to relate more about their health and health-care than had been asked for in the closed questions. Each meaning unit of the men’s comments was sorted into one of the following four categories: 1) prostate cancer’s influence on health; 2) clarifications of answers to the survey; 3) descriptions of well-being despite the cancer; and 4) experiences of care and a need for contact with the health care. The categories and codes described below are displayed in Table 3. The distribution of comments is shown in Figure 1, and the change in the distribution of comments over time is presented in Figure 2. The content of patients’ free-text comments illustrate a variation of experiences and needs related to their health, life and treatment, and how these experiences and needs are changing over time.

In our longitudinal study a total of 897 men with prostate cancer returned 4443 questionnaires. Of these 372 participants (41%) had responded at least once to the open-ended question, i.e., 17% of the returned questionnaires. In line with other studies [12] [25] , most of the comments were either related to the influence of the cancer on the men’s overall health or a clarification of the answers in the survey. The majority of participants wrote between one to four comments during the study period. As in results of other studies focusing on the frequency of responses to an open-ended question over time [25] [26] , we too found that the frequency of comments shifted over time. Comments clarifying answers to the survey were most frequent in the first year post-EBRT, while comments related to the prostate cancer’s influence on health began to rise three months after ERBT-start and stayed steady in the following years before beginning a decline in year eight (Figure 2). This may indicate that the men have different concerns at different times, possibly because their initial concerns, which focused on survival, might have been resolved by the two-year follow-up. Similar experiences of PC’s influence on men’s health during this time, and balancing a changed life and uncertainty as the time goes was also reported by others [27] .

Our overall interpretation is that the men took the time to write comments mainly to explain to the researchers when their scoring on the survey was related to health problems other than the PC. The analysis also revealed that the men used the open-ended question to communicate experiences of their health, illness, lives, and care. This is similar to the findings in other studies [12] [13] [28] . Maliski and Litwin [25] found that such comments contain clarifications of answers in the survey and provide elaboration and contextualization of participants’ symptoms and care. Similarly, in a recently published study of needs for psychological support among patients with head and neck cancer [29] , participants expressed the importance of the context of their responses and acknowledged that their responses would be different in other circumstances and context.

As in the study by Corner et al. [12] , most of the comments in the present study seemed to illustrate a process of the men’s efforts to make meaning of the illness for themselves through conveying their feelings, experiences, facts, explanations, and needs for contact with health care. According to Wallace and Storms [5] , identifying the needs of men with PC is an essential step in understanding their experience of this disease. In the study by Powel and Clark [30] , 48 of the 71 men surveyed after PC surgery added comments to the open-ended question at the end of the interview. Our result also reveals the respondents’ wish to say more than a response scale allows and speaks in favour of including an open-ended item in surveys. According to Foddy [31] , some respondents appreciated the opportunity to express themselves in their own words rather than choosing suggested answers. Open-ended questions might allow the participants to write more spontaneously, creatively and personally than is possible in a forced-choice survey; thereby making it feasible for the researcher to understand the world as seen by the participants, and grasp the strength of their feelings [15] [31] [32] .

Using free-text comments, Corner et al. [12] showed that experiencing good support from health care has a great impact on patients’ health, their self-management of illness, and the effects of the disease and treatment. Combined with PROM, such comments can enable evaluation and improvement of health care services, particularly if health care professionals are involved [12] [14] . Similarly a study from Denmark based on a patient satisfaction survey showed that free-text comments in questionnaires were more useful than the actual number of satisfied and not satisfied patients, and these comments could be used to improve health-care services by making it more person-centered [14] . In line with others [12] [33] [34] our results, support that open-ended questions could be useful for researchers and health-care providers, to address and identify needs of improvement not only of questionnaires but also treatment regimens and health-care in general. Furthermore, analysis of open-ended questions may provide valuable data about patients’ individual needs and expectations related to the health-care services [12] [13] [35] . Our results and others’ showed that health care professionals should have a greater focus on patients’ needs for support during the whole disease trajectory [36] [37] , an effort taken seriously in Sweden by the current development of contact nurses for different cancer trajectories [38] . Others too have described the benefits of placing nurses as “navigators” or “guiding lights” for patients [39] [40] . A role that could possibly be expanded beyond the acute phase, as some of the men’s comments indicated they were in need of contact with health care later in the disease trajectory.

Thus, it is likely that by adding a comment the men took the opportunity to reveal something important to them beyond the issues asked for in the questionnaire. If this is in fact the case, it raises the question of whether the researchers sending out the HRQOL questionnaires responded to the men’s questions. This in turn moves the issue of including an open-ended item in a forced-choice survey into the ethical realm concerning researchers’ appropriate responses to those comments and their obligation to analyze and present the content of these comments to a broader audience [11] . Including such a question is an opportunity for patients to voice their opinion, and ignoring such data in the analysis, according to O’Cathain and Thomas [11] , is unethical. Such questions may also help to balance power between researchers and participants and give participants an opportunity to ask about health-care issues, express concerns about the research, and talk about issues that are important to them [11] [12] . Although not necessarily representative, open-ended questions are described as usable since they provide valuable data not revealed by quantitative studies [11] [12] [35] [41] . These questions may provide a valuable supplement to quantitative patient-satisfaction surveys [12] [14] , as open-ended questions allow respondents to provide concrete suggestions for improvement of care, something also found by others [14] [33] [34] .

This study has strengths and limitations. The longitudinal design and the use of an open-ended question produced results outside the standardized questionnaire that better captured the men’s thoughts and feelings about PC and their treatment. Further, such questions allow the participants to express their views and discuss issues of priority to them. However, the results cannot be viewed as representative experiences of all men undergoing the treatment for PC. Using such paper-based questionnaires have acknowledged limitations. Individual writing skills might influence the frequency and content of responses, and we had no opportunity to probe and expand such responses as would be possible in a verbal interview. Web- or phone-based questionnaires might make the answers more understandable as could depth-interviews [32] . Failure analysis comparing the participants with non-participants, with no free-text comments, could not be performed due to missing data regarding education levels and employment among non-participants. This may reduce the possibility to draw conclusions and generalize the results. The final categorisation of responses was generated from patient responses and in consensus between the co-authors.

Comments on open-ended questions in a PROM-survey often contain additional information about the participants’ health and quality of life issues not revealed in the closed-ended questions. It also shows the need for large population surveys that further explore the area because of the limited attention given to these issues. The results of this study show that participants’ comments on open-ended questions in a PROM-survey make it possible for the researchers to understand their scoring on the survey, as well as important aspects of their lives during and after PC treatment that are not measured by a scaled questionnaire. The data from free-text comments reinforced the need for greater emphasis by cancer services to support individuals to self-manage following completion of PC-treatment. Our results also complement the ongoing discussion regarding the potential benefit of adding open-ended questions to a standardized closed-ended PROM-questionnaire, especially in a prospective long-term study after treatment of PC.

We recommend that an ethical discussion takes place before adding an open-ended item to a PROM-survey, in order to ensure that proper care is taken of participants’ answers and thoughts. By using such questions in a questionnaire, health-care professionals and researchers can increase their understanding of people’s reactions to and expectations of health care services and manage this knowledge based on the patients’ perspective to improve care to care users. Furthermore, open-ended questions may help capture a broader picture of patients’ experiences of HRQL-related issues than closed-ended questions may. If the intent is not to use and understand patients’ responses, then open-ended questions should be omitted on a questionnaire.

We wish to express our sincere gratitude to Helena Ekegren Hällgren, RN, Axlagården, Umeå, for her valuable data collection and input during the analysis of the material.

We also wish to acknowledge all the men for their willingness to share their experiences.

This investigation was supported by grants from the Lion’s Cancer Research Foundation at Umeå University and the Cancer and Traffic Injury Fund.

Senada Hajdarevic,Birgit H. Rasmussen,Per Fransson, (2016) You Need to Know More to Understand My Scoring on the Survey: Free-Text Comments as Part of a PROM-Survey of Men with Prostate Cancer. Open Journal of Nursing,06,365-375. doi: 10.4236/ojn.2016.65038