Clinical practice as research for a rare condition: systematic research review of qualitative research exploring patients’ experiences of penile cancer

Background: Penile cancer is a rare but destructive malignancy. The aim of this study was to identify published qualitative research exploring patients' experiences of being diagnosed and treated for penile cancer. As only one study met our inclusion criteria and yet there were five borderline studies, a secondary aim that emerged was to discuss those studies to see what, if anything, we could learn. Methods: We searched ASSIA, CINAHL, EMBASE, PUBMED/MEDLINE, PsycINFO & Web of Science and found 313 papers published since 1990. Two reviewers independently selected 17 papers for potential inclusion using titles and abstracts, which were obtained and independently assessed. A synthesis was not possible as only one study met our inclusion criteria. Five borderline studies, covering 4 countries, invited closer inspection because they are often reported in guidelines on penile cancer. Results: The 5 borderline studies reported using a mixed methods design combining a psychometric measure with interviews. Unfortunately, none of these studies reported the method or process used for analysing qualitative data or for integrating the interview and psychometric findings, making it difficult to understand the interview element of their research. Conclusions: If we are to understand and improve the long-term consequences of treatment for penile cancer, qualitative studies of patients’ experiences need to be conducted with high quality analysis and reporting. While pen-and-paper questionnaires may take up little of the time of clinicians conducting research about rare conditions, time could be better used by using methodologies that explore patients experiences.