The Informational Needs of Prostate Cancer Patients Treated with Radical Prostatectomy Regarding Adjuvant or Salvage Radiotherapy: Determinants of Community Health Pilot Project

Abstract

Background

Prostate cancer patients face important treatment decisions. The role of adjuvant and salvage radiotherapy (RT) is now less controversial in terms of the timing of the treatment after radical prostatectomy, because few randomized trials demonstrated the benefit of early RT in terms of biochemical control and improved survival.

Purpose

To evaluate the informational needs of prostate patients referred to Odette Cancer Centre for post-prostatectomy adjuvant or salvage RT. In addition, we investigated how social determinants of health, such as income and education affected these needs.

Methods

A needs assessment questionnaire was developed and piloted among 10 prostate cancer patients. A 4-point Likert scale was used to examine patients' knowledge and understanding of various aspects of post-prostatectomy RT.

Results

The most frequent patient response corresponded to having “some” knowledge about the topic (Likert scale 3), except for two items, which included knowledge about survival rates for different treatment options and management of side effects related to radiation treatment (Likert scale 2: “a little”). No causative relationship was found between the patients' income and/or education, and their knowledge of various treatment aspects.

Conclusions

This study demonstrated that even though our patients had some knowledge about prostate cancer and its treatments, they may still require more information regarding the management of RT-related side effects, local recurrence, and survival rates after post-prostatectomy RT. These findings will be used to conduct a thorough informational needs assessment to aid in the future development and testing of an educational tool for patients with prostate cancer after radical prostatectomy, that will assist them in making decisions about their adjuvant or salvage treatment options.

Résumé

Contexte

Les patients atteints d’un cancer de la prostate font face à des décisions de traitement importantes. Le rôle des traitements adjuvants et de sauvetage en radiothérapie (RT) est maintenant moins controversé en ce qui concerne le moment du traitement après une prostatectomie radicale, peu d’essais randomisés ayant démontré les avantages d’une RT hâtive en termes de contrôle biochimique et d’amélioration du taux de survie.

Objet

Évaluer les besoins d’information des patients confiés au Centre d’oncologie Odette pour des traitements adjuvants ou de sauvetage en RT après une prostatectomie. Nous avons également examiné l’incidence des déterminants sociaux de la santé, comme le revenu et l’éducation, sur ces besoins.

Méthodes

Un questionnaire d’évaluation des besoins a été préparé et testé dans le cadre d’un projet pilote auprès de dix patients atteints d’un cancer de la prostate. Une échelle de Likert à quatre niveaux a été utilisée pour évaluer les connaissances des patients et leur compréhension des différents aspects de a RT post-prostatectomie RT.

Résultats

La réponse la plus fréquente correspond à une « certaine » connaissance du sujet (Likert 3), sauf pour les deux éléments portant sur la connaissance du taux de survie pour différentes options de traitement et la gestion des effets secondaires de la radiothérapie (Likert 2 : « faible » connaissance). Aucune relation de cause à effet n’a été trouvée entre le revenu et l’éducation des patients et leur connaissance des différents aspects des traitements.

Conclusion

Cette étude a démontré que même si les patients ont certaines connaissances à propos du cancer de la prostate et de ses traitements, ils ont quand même besoin d’information additionnelle concernant la gestion des effets secondaires liés à la RT, à la récurrence locale et aux taux de survie après une RT post-prostatectomie. Ces conclusions seront utilisées pour mener une étude approfondie des besoins d’information et aider à la conception et à la mise à l’essai d’un outil d’éducation pour les patients ayant un cancer de la prostate afin de les aider à prendre des décisions éclairées concernant les traitements adjuvants et les traitements de sauvetage en RT après une prostatectomie radicale.

Introduction

Prostate cancer is the most frequently diagnosed cancer in Canadian men and is the third most prevalent cause of cancer death among Canadian men. Approximately half of all newly diagnosed prostate cancers occur in Canadians aged 70 or older [1]. Radical prostatectomy is a well-known treatment modality for localized prostate cancer. Adjuvant radiotherapy (RT) refers to radiation treatment administered within the first six months after radical prostatectomy, whereas salvage RT refers to radiation treatment administered when biochemical failure has occurred (i.e., a detectable elevation in prostate-specific antigen [PSA]) [2].

The role of adjuvant and salvage RT remains controversial in terms of the timing of the treatment after radical prostatectomy. Numerous retrospective studies and three recently completed randomized trials have demonstrated improved biochemical control and/or disease-free survival with adjuvant RT [2], [3], [4], [5]. However, the overall survival benefit is unclear because the randomized trials comparing post-prostatectomy RT with observation alone were underpowered to detect significant improvement, and longer follow-up is necessary. Adjuvant RT after radical prostatectomy, for men with pathological stage T3 prostate cancer, significantly reduced the risk of metastasis and increased survival [6]. Despite these encouraging results, several investigators still propose waiting for evidence of biochemical failure and subsequently attempting salvage RT [2], [3], [4], [5], [6].

Many post-prostatectomy patients are not referred for adjuvant RT or are referred for salvage RT when their PSA becomes elevated. Waiting decreases the chances of success of postoperative RT and can have a negative impact on disease control. Ultimately, it is the patient’s decision whether to undergo adjuvant or salvage RT; however, the patient’s decision will likely be based on information provided by various health care providers such as radiation oncologists, urologists, and family physicians. Because there is ambiguity and uncertainty surrounding adjuvant RT and salvage RT, this information may be conflicting in content, difficult to understand, and may contain personal bias [7]. Thus the patients may experience feelings of anxiety and/or depression if they have not been offered adequate information or conflicting information regarding their treatment plan [8], [9].

There are many factors that could affect the informational needs of prostate cancer patients and how informed they feel in the decision-making process regarding their treatment plan. Some of these factors might include socioeconomic status, social support, and language ability. Levels of income and associated educational attainment have been shown in the literature to affect prostate cancer patients’ informational needs. One such study conducted in Australia found that unmet psychological need was greatest in low-income prostate cancer patients, and prostate cancer patients with a primary education had the greatest need with respect to health system information and psychological and sexuality domains [10]. Another study from the University Medical Associates Clinic at the University of Virginia and the Central Virginia Community Health Center in Buckingham County, both low-income general medical clinics, investigated knowledge about prostate cancer among African-American men older than age 40. It was found that men from these clinics had limited comprehension about prostate cancer [11]. This informational gap is also seen in patients with other types of cancers. For example, Hwang reported that a lower level of education was a significant predictor of unmet informational need in breast cancer patients in Korea. Additionally, this study showed that breast cancer patients with a higher level of education were more likely to report unmet needs to their health care professionals [12].

It has been well-established in the literature that patient participation in their health care decisions not only helps facilitate informed consent, but has also increased patient satisfaction with treatment choices and associated outcomes. In addition, participation has been linked with decreased psychological morbidity associated with treatment. To help patients with treatment choices, decision aids (DAs) have been frequently used. DAs are educational tools used within the health care setting designed to help patients through the decision-making process [13]. The content that is put into a DA comes from both the medical experts (health care professionals) and from the patients [13]. However, it has been demonstrated that there is considerable variability among health care professionals and patients about what information is considered important to the decision [7], [13], [14]. Therefore, a pilot study was conducted to explore postprostatectomy prostate cancer patients’ informational needs and experiences going through the decision-making process of salvage or adjuvant RT. Furthermore, by determining the influence that socioeconomic status, with respect to income and education, has on the patients’ information gaps, health care providers can further refine the delivery and content of information. The findings from this study will provide information for the future development and testing of a DA for patients with prostate cancer after radical prostatectomy to assist them in making decisions about their adjuvant or salvage RT treatment options.