The Patient Care Travelling Record© in Palliative Care

Abstract

The Patient Care Travelling Record (PCTR) is a passport-like health-care summary that, in previous research by the authors, has been found to be a feasible and acceptable tool to convey important clinical information about the palliative care patient. This randomized controlled trial was conducted to determine the effectiveness and efficiency of this Record in improving patient mood, decreasing uncertainty, improving satisfaction with health care, reducing use of health-care services, and maximizing pain control. Eligible patients were randomized to receive or not receive the PCTR (completed by nurse or physician and reviewed jointly with the patient). As baseline entry into the study and then at 1 and 2 months, patients completed measures on level of certainty, mood states, satisfaction with care, levels of pain, and health-care services utilization. During the 2-year study period, only 20% (N = 61) of the patients enrolled in a palliative care program in Southern Ontario were eligible for the trial. Of these patients, 18 died, 15 declined to participate, and 7 were emotionally unable to complete the questionnaires. Thus 21 patients completed the trial. With the exception of those age 65 years and over, the patients using the Record reported decreased levels of uncertainty on follow-up. There was no additional use of health-care services, no differences in mood states, pain relief, or satisfaction with health care. It is significant that 80% of palliative patients were not eligible because their physical and psychological status rendered them insufficiently stable to participate in a research study. Because of their vulnerable status, these patients may be ideal for the utilization of the Record in clinical care. Although research in this palliative care population is challenging due to difficulties with recruitment and high dropout rates due to death, the PCTR, which was previously shown to be acceptable and feasible, has now been shown to be effective in reducing patient uncertainty, specifically for adults under 65 years. Indications for future research are described.

Does the patient‐held record improve continuity and related outcomes in cancer care: a systematic review

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“…In Latimer et al. ’s trial 4 the record was reviewed at each visit of the patient to the palliative care clinic, and in Van Wersch et al. ’s trial 12 and the other study with head and neck cancer patients 21 a specially assigned social nurse acted as a ‘logbook/diary coordinator’.…”

“…As a consequence, inadequate symptom control may be administered, psychosocial needs overlooked and inappropriate referrals made. This can lead to unnecessary hospital admissions, repeated diagnostic tests and decisions against patients’ wishes, resulting in a waste of scarce resources 1,4 …”

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Information exchange among physicians caring for the same patient in the community

“…Other potential solutions include personalized health records. [24][25][26][27] We believe that centralized health information systems could have the greatest benefit for information transmission.…”