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Objective: Short and convenient checklists are necessary tools to support and structure needs assessments in daily palliative practice. This study aims to develop a short version of the Problems and Needs in Palliative Care questionnaire (PNPC-sv); a self-report questionnaire for patients covering all dimensions of palliative care, to investigate their problems and (unmet) needs. Methods: The original Problems and Needs in Palliative Care questionnaire (PNPC) instrument is a comprehensive checklist of problems and needs for palliative care, and has shown validity and reliability. With its 90 items, however, it is not always practical. Thus it was abridged to a short version with 33 items. The validity and reliability are established with its item response, its internal consistency, and with its correlations with the original PNPC and with European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 and COOP/WONCA quality-of-life measures. A secondary analysis was done with data from 94 patients with metastatic cancer who had completed the long version. Results: Each item in the PNPC represents a problem relevant to 25% of the patients or more. High correlations of PNPC-sv and PNPC domains demonstrate construct validity. The dimension reliability was satisfactory (Cronbach's α > 0.70), while two problem-aspect domains were less coherent. The PNPC-sv domains show convergent validity with corresponding health-related quality-of-life domains. Conclusion: The PNPC-sv is a concise, patient-centred tool that helps to identify the problems affecting the patient's quality of life and needs for care. It identifies prevalent needs for care and appears reliable. Further research should study the clinical effects of integrating the questionnaire into daily palliative-care practice. [ABSTRACT FROM AUTHOR]

This study presents a comprehensive overview of the problems patients experience in a palliative phase of cancer. A two-step qualitative method was used: in-depth interviews with patients and relatives (N=9 patients+7 relatives), followed by interviews (N=31patients+15 relatives) using a checklist to confirm and complete the picture. Quality of life and quality of care domains were addressed. Patients experienced problems in all of these palliative care domains, although individual patients may have experienced only a few problems. Fatigue, feelings of futility, reluctance to accept help, fear of suffering and the fear that help would not be available if needed, were common problems. Communication problems arose when a grudge against a GP had remained, or because one family member tried to spare the other a confrontation with his/her feelings of fear or grief. A comprehensive checklist of relevant problems is presented. [ABSTRACT FROM AUTHOR]

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.

No instrument to assess autonomy problems in palliative care is currently available. The purpose of this study was to develop a comprehensive and concise questionnaire to measure autonomy problems in palliative cancer patients and to study its validity and reliability. We systematically developed a questionnaire through: a) a literature review of the concepts and elements of autonomy; b) qualitative analysis of interviews with patients and professional carers; c) the construction of questionnaires; and d) testing validity and reliability. The basic conceptual elements were: dependency, losing control, and limitation of activities. Patients with disseminated cancer in the palliative stage of the disease (n = 64) participated in the study. A 9-item Patient Autonomy Questionnaire (PAQ) was developed (Cronbach's alpha 0.86), followed by a concise 4-item version (PAQs) (Cronbach's alpha 0.71). Autonomy problems were more prevalent than pain problems. The development of the PAQ may help draw attention to autonomy problems.

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.