Palliative day care ��� a study of well-being and health-related quality of life G Andersson Svid��n Department of Neurobiology, Health Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Huddinge, CJ F��rst Research & Development Unit Stockholms Sjukhem Foundation, and Department of Oncology���Pathology Karolinska Institutet, Stockholm, L von Koch and L Borell Department of Neurobiology, Health Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Huddinge Aim: The aim of the study was to study the outcomes of palliative day care, in terms of health-related quality of life and the emotional well-being of cancer patients partici- pating in a palliative day care programme for a period of five weeks, compared with a group of palliative cancer patients not participating in day-care. Methods: The day care sample comprised of patients in a palliative day care programme delivered in two different day care facilities. Participants in the comparison group were recruited from a palliative home care service facility. All patients had a cancer diagnosis. The participants were invited to respond to two questionnaires once a week for a period of five weeks the European Organization for Research and Treatment of Cancer Qual- ity of Life Questionnaire (EORTC QLQ-30) and the Mood Adjective List (MACL). Results: The participants in the day care group and the comparison group reported similar levels of perceived functioning and symptoms, as measured by the EORTC QLQ-30, with no significant differences between the groups. However, the day care group reported higher levels of emotional well-being as measured by the MACL than the comparison group reported, although these differences were not statistically significant. Palliative Medicine (2009) 23: 441���447 Key words: comparative study health-related quality of life longitudinal palliative day care Introduction Palliative day care is a service with a multidisciplinary approach. The published literature of palliative day care, mainly based on the situation in the United Kingdom, describes the objectives of this type of care to be social, psychological and physical.1 In a systematic review of day-care programmes, specialising in palliative care Davies and Higginson2 report that there is evidence of high satisfaction among patients in palliative day care in qualitative studies. This report also stresses that the patients value the social support and opportunity to take part in the activities provided within the programme. However, there is still no evidence as to whether palliative day care improves symptom control or health-related quality of life. In another review related to social objectives in pallia- tive day care, Payne3 claims that palliative day care is an example in which social objectives and goals are identified but the research has focused on health-care outcomes. Goodwin, et al.4 report in a prospective comparative study that palliative day care was not found to improve the health-related quality of life, and suggest that the lim- itations in the quality of life measures in identifying effects indicate the need for further research in this area. Qualitative studies of palliative day care have found that the most essential positive experience from the client���s perspective of the day care centre was the social environment providing opportunities for engagement in occupations. For example, the patients considered it important to meet other people and to experience a sense of community. Having the possibility to participate in creative activities that took place in a special environ- ment with a welcoming and relaxed atmosphere was also highly valued.5���11 Palliative day care is a service that provides a range of services and activities that transgresses the boundaries of health and social care.1 The few palliative day care set- tings in Sweden could be described as applying a social model of care placed within a medical context, providing an environment for social and therapeutic activity. With this special model of day care provided in Sweden, it is of interest to evaluate the programme for possible advan- tages for the patients. The specific aim of this study was to study the outcomes of palliative day care, in terms of Correspondence to: Gerd Andersson Svid��n, PhD, Reg. OT, Department of Neurobiology, Care Sciences and Society, Divi- sion of Occupational Therapy, Karolinska Institutet, S- 141 83 Huddinge, Sweden. Email: gerd.andersson.sviden@ki.se �� 2009 SAGE Publications, Los Angeles, London, New Delhi and Singapore 10.1177/0269216309104891 Palliative Medicine 2009 23: 441���447

health-related quality of life and the emotional well-being of cancer patients participating in a palliative day-care programme for a period of 5 weeks, compared with a group of patients in palliative care but not participating in day care. Method Participants The day care sample comprised of patients consecutively enrolled in a palliative day-care programme delivered in two different day care facilities. Participants in the com- parison group were recruited from a palliative home care service facility. The potential participants in the compari- son group were matched with the day care group with respect to gender, age and level of functioning using the Karnofsky performance index.12 All participants in the study had a cancer diagnosis. Additional criteria for the study were no obvious confusion and the ability to respond on their own and in writing to a questionnaire. Every comparison patient was matched with two day care patients, due to the difficulties to recruit patients meeting all the matching criteria from a limited popula- tion and within a reasonable time frame. Every compari- son client was matched with two day care patients. The patients were recruited from Stockholms Sjukhem and Erstag��rdskliniken, Sweden. The palliative day-care programme The palliative day-care programme was a hospital-based outpatient service provided to palliative cancer patients in two separate facilities. The participants visited the day care setting one to three times a week, depending on their situation, needs and desires. There were about 8���10 participants attending each day, spending between 2 and 5 h in the setting. The programme aimed to enhance well-being and quality of life. The main focus of the pro- gramme was to offer opportunities to participate in crea- tive and social activities. Included in the programme were different activities, like arts and crafts, gardening, physi- cal exercise, outings and gathering around for coffee and lunch. Activities were organised both on a group and on an individual basis. The goal and the content of the two different facilities were the same. Occupational therapists and nurses managed the programmes, and a multi- professional team comprising of a physiotherapist, a phy- sician, a social worker and a chaplain was available for the participants if required. Procedure of the study Before deciding on whether to participate in a day-care programme, the patients were invited to visit the day care setting. Once the patients had decided to attend the programme they were asked if they would like to partici- pate in the study. The participants were invited to respond to two questionnaires once a week for a period of 5 weeks. For the palliative day care group, the first time was 1��� 2 weeks after their first visit to the day care setting. The 5-week period of data collection in the comparison group was not related to entering the palliative home care pro- gramme. The participants in the comparison group could have received palliative home care for any length of time as long as they fulfilled the inclusion and matching crite- ria. The comparison group filled in the questionnaires in their homes at a time of their own choice. The data collec- tion took place during the period of 2003���2005. The study was approved by the Research Ethics Committee at Karolinska Institutet (Reference Number: 01-219). Questionnaires The assessment tools used included the measurement of health-related quality of life, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-30)13 and the measurement of emotional well-being, the Mood Adjective List (MACL).14 The EORTC QLQ-C3013,15,16 is a self-assessment instrument of symptoms and functioning. The question- naire includes a total of 30 items that together make up five subscales of functioning physical (five items), emo- tional functioning (four items), role (two items), cognitive (two items) and social (two items) functioning, as well as global health status (two items). High scores on the EORTC QLQ-C30 functional scales represent good func- tioning. The questionnaire also comprises three symptom scales including nausea and vomiting (two items), fatigue (three items) and pain (two items), and six single items assessing financial impact and various physical symp- toms. High scores on the EORTC QLQ-C30 symptom scales indicate that the respondent has many symptoms. Missing items were imputed by the method advocated by the EORTC QLQ research group if at least half of the items from a scale were completed, the mean value for these items was imputed for those missing.15 The raw scores were transformed to a 0���100 scale.15 A mean change in scores of 5���10 has been found to represent ���a little��� subjective change in the patients, whereas a change of 10���20 represents a moderate change.17 Thus, differ- ences of 10 points or more may be regarded as clinically significant. Reference data for the EORTC QLQ-C30 in a Norwegian population sample were reported by Hjerm- stad, et al.18 This questionnaire was selected because it has been found to be valid and reliable in a variety of palliative care services, and also includes emotional and social functioning, which was especially thought to reflect the influence of the day care. 442 G Andersson Svid��n et al.