The problems experienced by patients with cancer and their needs for palliative care

Abstract

Objectives: To investigate the problems that patients experience and their met- and unmet needs for professional help. This information is necessary to tailor palliative care to patient needs.

Patients and methods: Patients (n=94) with disseminated cancer completed a validated checklist with 90 potential problems and needs for palliative care (PNPC questionnaire).

Main results: On average, patients experienced 37 problems (range 0-68) and required more professional attention for eight problems (range 0-71). The five most prevalent problems were: fatigue, heavy housework, coping with the unpredictability of the future, fear of metastases, and frustrations because I can do less than before. The five issues most in need of extra attention were: informational needs, coping with the unpredictability of the future, fear of metastases, fear of physical suffering, and difficulties remembering what was told (during consultations). Younger patients experienced more social, psychological, and financial problems. Some 10% of patients expressed a multitude of problems and needs.

Conclusions: While patients with metastasized cancer experienced a wide variety of problems, they asked for more support for only a few specific problems. Evidently, "problems" are not synonymous with unmet needs. Therefore, not only problems but also needs for care should be assessed. A structural need for support to cope with fears of suffering and loss of autonomy was found. Ten percent of patients expressed a multitude of problems and needs and might benefit either from psychological counseling or better palliative care.