Abstract
BackgroundEarly stage prostate cancer patients may be allocated to active surveillance, where the condition is observed over time with no intervention. Living with a cancer diagnosis may impose stress on both the men and their spouses.In this study we explore whether the scores of and verbal responses to a Health Literacy Questionnaire can be used to identify individuals in need of information and support and to reveal differences in perception and understanding in health related situations within couples.MethodsWe used the nine-domain Health Literacy Questionnaire (HLQ) as a framework to explore health literacy in eight couples where the men were on active surveillance for prostate cancer progression. Scores were calculated for each domain for both individuals. For each couple differences in scores were also calculated and related to the informants’ self-reported experiences and reflections in relation to participating in an active surveillance program. Also an inductive analysis was performed to identify themes in the responses and these themes were compared to those of HLQ.ResultsThe men tended to score higher than their spouses. There was no consistent relation between scores and the reported experiences and reflections.However, some interesting patterns emerged, e.g. in two of the three couples with the largest within couple differences in HLQ scores, responses revealed discrepancies in how the men and their spouses perceived their situation.Also, three themes emerged which related to six of the HLQ domains, i.e. involvement of spouses and other people around the men; support from and interaction with healthcare professionals; and use of the Internet for information retrieval.ConclusionsUsing the HLQ as an interview framework provided insight into the differences within couples and provided new perspectives on their experiences, including their contact with health professionals and the patient-spouse interaction when dealing with prostate cancer. The HLQ used as a dialogue tool may be an adjunct to assist healthcare providers to understand the need for support and information of men with prostate cancer on active surveillance and the dynamics within couples.
Highlights
Stage prostate cancer patients may be allocated to active surveillance, where the condition is observed over time with no intervention
When men are diagnosed with early stage prostate cancer (PCa) they may be allocated to active surveillance where the condition is observed over time with no intervention [1]
This paper introduces the concept of health literacy and a multidimensional questionnaire to measure health literacy - the Health Literacy Questionnaire (HLQ), a tool that brings new insight into the health situation of men with PCa and their spouses
Summary
Stage prostate cancer patients may be allocated to active surveillance, where the condition is observed over time with no intervention. When men are diagnosed with early stage prostate cancer (PCa) they may be allocated to active surveillance where the condition is observed over time with no intervention [1]. Living with a potentially harmful condition may lead to co-morbidities such as anxiety and depression [2, 3] and requires the ability to understand the situation and to actively engage with health professionals. In other words, these men need to be health literate [4]. Spouses of PCa patients on active surveillance may even have higher levels of anxiety than the patients themselves [8], potentially due to the lack of involvement or access to information or due to differences in how the men and their partners perceive and understand the situation
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