Patient-perceived usefulness and practical obstacles of patient-held records for cancer patients in Japan: OPTIM study

Abstract

Background:

Although the use of a patient-held record (PHR) for cancer patients has been introduced in many settings, little is known about the role of the PHR in palliative care settings and use in Asian cultures.

Aim:

This study investigated the patient-perceived usefulness and practical obstacles of using the PHR specifically designed for palliative care patients.

Design:

This study adopted a qualitative design based on semi-structured interviews and content analysis.

Setting/participants:

Fifty cancer patients were recruited from two regions in Japan. They used the PHR for more than three months, and then were asked to participate in a face-to-face interview.

Results:

The content analysis revealed the following patient-perceived usefulness of the PHR: (1) increase in patient–staff communication; (2) increase in patient–family communication; (3) increase in patient–patient communication; (4) increase in understanding of medical conditions and treatments; and (5) facilitating end-of-life care discussion. The practical obstacles to using the PHR were also indicated: (1) the lack of adequate instruction about the role of the PHR; (2) undervaluing the role of the PHR and sharing information by medical professionals; (3) patients’ unwillingness to participate in decision making; (4) concerns about privacy; (5) burdensome nature of self-reporting; and (6) patients’ preference for their own ways of recording.

Conclusions:

The PHR can be helpful in facilitating communication, understanding medical conditions and treatments, and facilitating end-of-life care discussion; however, for wide-spread implementation, resolving the obstacles related to both patients and health-care professionals is required.