Informal caregivers experience problems of their own for which they need support, but despite the efforts of the World Health Organization to include the well-being of family members and caregivers in the concept of palliative care, their needs are rarely assessed systematically. This report explores caregivers' problems and their needs for professional support. Seventy-six caregivers of cancer patients with advanced disease completed a comprehensive needs assessment questionnaire, the Problems and Needs in Palliative Care questionnaire-caregiver form, listing 67 potential problems in their quality of life and their role of caregiver and 9 items concerning informational needs. The results of this study reveal that the "Top 20" list of the problems and needs reported by caregivers includes fears and emotional burdens; for the most part, caregivers did not need any more professional attention than they were already receiving. Many, however, needed support for managing patients' symptoms and wanted professional attention for the availability and coordination of services. Despite communalities, there was diversity in caregivers' individual needs. Personal needs could be identified with the Problems and Needs in Palliative Care questionnaire-caregiver form checklist. Although only a few caregivers were affected by some issues, such as financial problems, help for them was often needed. In conclusion, most caregivers would like more professional attention for 4 or 5 specific issues, often related to their competence as caregivers for their patients. Using structured needs assessments with the Problems and Needs in Palliative Care questionnaire-caregiver form seems a feasible method to identify the needs of individual caregivers in palliative care.

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.

This study describes a new clinical tool for needs assessment in palliative care: the Problems and Needs in Palliative Care questionnaire (PNPC). It was developed to support the provision of care tailored to the specific demands of patients, which only can be provided when their needs are clearly identified. To test validity and reliability, 64 patients with metastatic cancer living at home completed the PNPC. Of 140 initial items, 2 were deleted because of low response. No important topics were missing. Dimensions were proposed to organize the problems and needs in a logical and practical array for use in individual patients, and to enable statistical analysis of patient-groups. Reliability analysis supported the proposed dimensions, with Cronbach's alpha coefficient >0.70 for dimensions with > or = 5 items, and alpha >0.65 for the 3- and 4-item dimensions. However, the dimensions 'physical symptoms' and 'social issues' lacked coherency with some low item-total correlations. The PNPC demonstrated convergent validity with the European Organization for Research and Treatment of Cancer (EORTC) and COOP-WONCA quality-of-life measures. These data are a first step in validating the PNPC, although the 'social issues' dimension needs reconsideration. Further studies are needed to evaluate clinical use.