Patients\u27 and Caregivers\u27 Needs, Experiences, Preferences and Research Priorities in Spiritual Care: A Focus Group Study Across Nine Countries.

Background: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited. Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers. Design: Focus group study. Setting/participants: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically. Results: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients’ and caregivers’ spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members’ de-prioritisation and lack of time. Patients’ research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers’ priorities included staff training, assessment, studying impact, and caregiver’s spiritual care needs. Conclusion: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research

Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care:A focus group study across nine countries

BackgroundSpiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.AimTo explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.DesignFocus group study.Setting/participantsSeparate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.ResultsA total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs.ConclusionTo meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research

A systematic review of patient reported factors associated with uptake and completion of cardiovascular lifestyle behaviour change

Background: Healthy lifestyles are an important facet of cardiovascular risk management. Unfortunately many individuals fail to engage with lifestyle change programmes. There are many factors that patients report as influencing their decisions about initiating lifestyle change. This is challenging for health care professionals who may lack the skills and time to address a broad range of barriers to lifestyle behaviour. Guidance on which factors to focus on during lifestyle consultations may assist healthcare professionals to hone their skills and knowledge leading to more productive patient interactions with ultimately better uptake of lifestyle behaviour change support. The aim of our study was to clarify which influences reported by patients predict uptake and completion of formal lifestyle change programmes. Methods: A systematic narrative review of quantitative observational studies reporting factors (influences) associated with uptake and completion of lifestyle behaviour change programmes. Quantitative observational studies involving patients at high risk of cardiovascular events were identified through electronic searching and screened against pre-defined selection criteria. Factors were extracted and organised into an existing qualitative framework. Results: 374 factors were extracted from 32 studies. Factors most consistently associated with uptake of lifestyle change related to support from family and friends, transport and other costs, and beliefs about the causes of illness and lifestyle change. Depression and anxiety also appear to influence uptake as well as completion. Many factors show inconsistent patterns with respect to uptake and completion of lifestyle change programmes. Conclusion: There are a small number of factors that consistently appear to influence uptake and completion of cardiovascular lifestyle behaviour change. These factors could be considered during patient consultations to promote a tailored approach to decision making about the most suitable type and level lifestyle behaviour change support

EQ-5D in Central and Eastern Europe : 2000-2015

Objective: Cost per quality-adjusted life year data are required for reimbursement decisions in many Central and Eastern European (CEE) countries. EQ-5D is by far the most commonly used instrument to generate utility values in CEE. This study aims to systematically review the literature on EQ-5D from eight CEE countries. Methods: An electronic database search was performed up to July 1, 2015 to identify original EQ-5D studies from the countries of interest. We analysed the use of EQ-5D with respect to clinical areas, methodological rigor, population norms and value sets. Results: We identified 143 studies providing 152 country-specific results with a total sample size of 81,619: Austria (n=11), Bulgaria (n=6), Czech Republic (n=18), Hungary (n=47), Poland (n=51), Romania (n=2), Slovakia (n=3) and Slovenia (n=14). Cardiovascular (20%), neurologic (16%), musculoskeletal (15%) and endocrine/nutritional/metabolic diseases (14%) were the most frequently studied clinical areas. Overall 112 (78%) of the studies reported EQ VAS results and 86 (60%) EQ-5D index scores, of which 27 (31%) did not specify the applied tariff. Hungary, Poland and Slovenia have population norms. Poland and Slovenia also have a national value set. Conclusions: Increasing use of EQ-5D is observed throughout CEE. The spread of health technology assessment activities in countries seems to be reflected in the number of EQ-5D studies. However, improvement in informed use and methodological quality of reporting is needed. In jurisdictions where no national value set is available, in order to ensure comparability we recommend to apply the most frequently used UK tariff. Regional collaboration between CEE countries should be strengthened

Pain as a challenge in nursing home residents with behavioral and psychological symptoms of dementia

Tomasz Nowak,1 Agnieszka Neumann-Podczaska,2 Ewa Deskur-Śmielecka,1 Arkadiusz Styszyński,1 Katarzyna Wieczorowska-Tobis1 1Laboratory of Geriatrics, Department of Palliative Medicine, Poznan University of Medical Sciences, Poznań, Poland; 2Department of Geriatric Medicine and Gerontology, Poznan University of Medical Sciences, Poznań, Poland Introduction: In patients with dementia, observational scales are recommended for use in the assessment of pain. Unfortunately, their application is rare, and as a consequence pain is frequently underdiagnosed and undertreated in these types of subjects. Thus, the aim of the study was to assess analgesic treatment in nursing home residents with cognitive impairment and to delineate the relationship between pain and behavioral and psychological symptoms of dementia.Patients and methods: The research was conducted in 2 nursing home facilities in Wielkopolska, Poland. The analyzed group consisted of 96 residents (78 female) with moderate and severe cognitive impairment in whom pain was assessed with the Abbey Pain Scale (APS) and agitation with the Cohen–Mansfield Agitation Inventory (CMAI). Thereafter, medical files related to drug prescriptions were analyzed.Results: Analgesics were consumed by 33 individuals (34%); 24 (25%) received regular pain treatment and 7 individuals (7%) - as when needed pain treatment. A relationship was found between the APS and CMAI (r=0.45, p<0.0001). Subjects with a higher CMAI received sedative drugs more frequently (p<0.001), and despite having a higher APS (p=0.001), this did not correlate with higher analgesia.Conclusion: Our study suggests that pain can be an important underlying cause of behavioral disturbances in older subjects with dementia. In order to reduce their frequency and to avoid excessive usage of sedatives, proper pain assessment and management are essential. Keywords: pain, analgesics, nursing home residents, older individuals, Abbey Pain Scale, CMA

Effects of rehabilitation based on endurance training in adolescent girls with surgically treated scoliosis

The aim of the study was to investigate whether appropriate rehabilitation program in the postoperative period can further improve pulmonary function and increase physical performance in patients with idiopathic scoliosis.The study group consisted of 16 adolescent girls in average 2.3 years after surgical treatment of scoliosis. Patients participated in a 4-week, intensive rehabilitation program. Before the rehabilitation program (Term I) and directly after completing it (Term II) patients performed a spiroergometry with intensity increasing up to the ventilatory threshold and a resting spirometry to assess their physical performance. Additionally, patients’ maximal oxygen uptake (VO2max) was determined indirectly. The results of the exercise test performed at the beginning of the study were used to select individual loads for the endurance training. The workload at which the ventilatory threshold was reached and the value of VO2max were significantly higher during the ergometry at Term II, which indicates that patients’ physical performance improved during the rehabilitation program. Ventilatory and circulatory parameters did not differ between exercise tests at Term I and II. Similar response of the cardiopulmonary system to submaximal exercise at greater work load proves increased physical performance. Vital capacity was similar at Term I and II. Maximal voluntary ventilation increased significantly following the rehabilitation program, but was still lower than the predicted value. Rehabilitation training in girls after surgical treatment of scoliosis caused an important increase in the physical performance capacity, which most probably was the result of the endurance training of individually selected intensity

Patients' and caregivers' needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries.

BackgroundSpiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.AimTo explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.DesignFocus group study.Setting/participantsSeparate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.ResultsA total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs.ConclusionTo meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research