The international phase 4 validation study of the EORTC QLQ-SWB32: A stand-alone measure of spiritual well-being for people receiving palliative care for cancer.

The EORTC Quality of Life Group has just completed the final phase (field-testing and validation) of an international project to develop a stand-alone measure of spiritual well-being (SWB) for palliative cancer patients. Participants (n = 451)-from 14 countries on four continents; 54% female; 188 Christian; 50 Muslim; 156 with no religion-completed a provisional 36-item measure of SWB plus the EORTC QLQ-C15-PAL (PAL), then took part in a structured debriefing interview. All items showed good score distribution across response categories. We assessed scale structure using principal component analysis and Rasch analysis, and explored construct validity, and convergent/divergent validity with the PAL. Twenty-two items in four scoring scales (Relationship with Self, Relationships with Others, Relationship with Someone or Something Greater, and Existential) explained 53% of the variance. The measure also includes a global SWB item and nine other items. Scores on the PAL global quality-of-life item and Emotional Functioning scale weakly-moderately correlated with scores on the global SWB item and two of the four SWB scales. This new validated 32-item SWB measure addresses a distinct aspect of quality-of-life, and is now available for use in research and clinical practice, with a role as both a measurement and an intervention tool.

Spiritual well-being and quality of life among Icelanders receiving palliative care: data from Icelandic pilot-testing of a provisional measure of spiritual well-being from the European Organisation for Research and Treatment of Cancer.

Palliative care focuses on improving quality of life (QoL). This study examined the feasibility of the Icelandic version of a provisional European Organisation for Research and Treatment of Cancer (EORTC) measure of spiritual well-being (SWB), and explored the relationship between SWB and QoL for palliative care patients in Iceland. Instruments from the EORTC were used: the provisional measure of SWB, which was undergoing pilot-testing in Iceland, and the EORTC QLQ C15-PAL. The correlation between scores was examined and descriptive statistics were used. Structured interviews explored feasibility. Thirty persons participated with average age 72 years. Belief in God or a higher power had the mean 3.33 on a 1-4 scale and the mean for overall SWB was 5.73 on a 1-7 scale. The mean score for global health/QoL was 59.4, physical functioning 48.5 and emotional functioning 78.9 on a 0-100 scale. Overall QoL was positively correlated with SWB showing r(30) = 0.386, P = 0.035. The participants found that answering the provisional EORTC QLQ-SWB prompted an emotional response and took the opportunity to discuss the subject. The provisional SWB measure was found relevant for the Icelandic context, and the study indicates that SWB and QoL are closely connected.

Pilot-testing the French version of a provisional European organisation for research and treatment of cancer (EORTC) measure of spiritual well-being for people receiving palliative care for cancer.

Spiritual well-being is increasingly recognised as an important aspect of patients' quality of life when living with a potentially life-limiting illness such as cancer. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group is developing a measure for assessing spiritual well-being cross-culturally for people receiving palliative care for cancer. The pilot-testing phase of the study explored potential problems related to the content and administration of a provisional version of this measure. The French version was pilot-tested with 12 patients in a palliative and supportive day care unit in Paris. Participants were asked to complete the measure and the EORTC QLQ-C15-PAL before being interviewed about their responses. The administration of the measure enabled participants to express the difficulties and existential concerns they experienced. The items were not considered intrusive, despite the sensitive topic of the measure. This article considers difficulties with items pertaining to 'religion' and 'spirituality' in the context of French culture. Overall, this measure appears to enhance holistic care, by providing caregivers with a means of broaching spirituality issues, a topic otherwise difficult to discuss in the context of palliative care.

Measures of spiritual issues for palliative care patients: a literature review.

Members of the Quality of Life Group (QLG) of the European Organisation for Research and Treatment of Cancer (EORTC) are developing a stand-alone functional measure of spiritual well being for palliative care patients, which will have both a clinical and a measurement application. This article discusses data from a literature review, conducted at two time points as part of the development process of this instrument. The review identified 29 existing measures of issues relating to patients' spirituality or spiritual well being. Twenty two are stand-alone measures of which 15 can be categorised as substantive (investigating the substance of respondents' beliefs) and seven as functional (exploring the function those beliefs serve). However, perhaps owing to the lack of consensus concerning spirituality or spiritual well being, the functional measures all have different (although sometimes overlapping) dimensions. In addition, they were all developed in a single cultural context (the United States), often with predominantly Christian participants, and most were not developed with palliative care patients. None is, therefore, entirely suitable for use with palliative care patients in the United Kingdom or continental Europe.

'Fighting for everything': service experiences of people severely affected by multiple sclerosis.

BACKGROUND: No previous research exists specifically exploring the needs of those people severely affected by multiple sclerosis (MS). METHODS: Semi-structured interviews were conducted with people identified by the referring health or social care professional as being severely affected by their MS and informal carers, in order to explore their perceptions of their illness and care. The data were analysed for themes using the constant comparative approach. RESULTS: The data relate to 32 people severely affected by MS, who identified several broad themes, relating to loss and change, and provision of services and care. In relation to service provision, people with MS (PwMS) and their carers identified two, interlinked themes--a lack of continuity and co-ordination of care, and a lack of information about services, aids and adaptations, welfare benefits and end-of-life issues. A further theme was identified, which underpinned and linked the two other themes, that of ;fighting for everything'--a sense that people had to struggle for their needs to be met. CONCLUSION: There is a need to develop models of care in order to better meet patients and carers needs for information, co-ordination, and to reduce the feeling of struggling to receive services.

Quality of life measures for the palliative care of people severely affected by multiple sclerosis: a systematic review.

Although there is increasing interest in measuring the quality of life (QoL) of people with multiple sclerosis (MS), relatively little is known about the issues of importance to people severely affected by MS. In the first of two systematic reviews, we searched the literature to identify measures that have been used to assess health-related QoL in people with MS, and described their measurement properties in terms of validity, reliability, responsiveness to change, and appropriateness for QoL assessment in people severely affected by MS. In the second review, we identified care domains important to people with MS, by reviewing survey, focus group and interview studies involving people with MS and/or their caregivers. Forty-six studies evaluating 12 disease-specific and ten generic QoL measures for patients, and one disease-specific measure for caregivers, satisfied all inclusion criteria. Sixteen focus group or interview studies and 51 questionnaire-based studies evaluated domains of care important to people with MS, and seven qualitative and 11 questionnaire-based studies assessed domains of care important to their caregivers. From these studies, we identified 15 domains of care important to people with MS and 12 domains important to caregivers. QoL measures differed markedly in their coverage of these care domains. Moreover, each measure fulfilled some but not all criteria of validity, reliability, responsiveness, and appropriateness. Further work is needed to clarify the domains of care relevant to people with severe MS, and to measure health-related QoL in this population.