Navarta-Sánchez M V, Ursua M E, Riverol Fernández M, Ambrosio L, Medina M, Díaz de Cerio S, Álvarez M J, Senosiain J M, Gorraiz A, Caparrós N, Anaut S, Martín-Lanas R, Recio M, Portillo M C
Faculty of Nursing, University of Navarre, C/ Irunlarrea, s/n, Edif. De los Castaños, 31008, Pamplona, Navarre, Spain.
Primary Health Care Center of San Juan, Navarre Service of Health-Osasunbidea, Plaza Obispo Irurita s/n Planta Baja, 31011, Pamplona, Navarre, Spain.
BMC Fam Pract. 2018 Apr 5;19(1):45. doi: 10.1186/s12875-018-0730-9.
Parkinson's disease progressively limits patients at different levels and as a result family members play a key role in their care. However, studies show lack of an integrative approach in Primary Care to respond to the difficulties and psychosocial changes experienced by them. The aim of this study is to evaluate the effects of a multidisciplinary psychoeducational intervention focusing on improving coping skills, the psychosocial adjustment to Parkinson's disease and the quality of life in patients and family carers in a Primary Care setting.
This quasi-experimental study with control group and mixed methods was designed to evaluate a multidisciplinary psychoeducational intervention. Based on the study power calculations, 100 people with Parkinson's disease and 100 family carers will be recruited and assigned to two groups. The intervention group will receive the ReNACE psychoeducational intervention. The control group will be given a general educational programme. The study will be carried out in six community-based health centres. The results obtained from the two groups will be collected for evaluation at three time points: at baseline, immediately after the intervention and at 6 months post-intervention. The results will be measured with these instruments: the Quality of Life Scale PDQ-39 for patients and the Scale of Quality of Life of Care-givers SQLC for family carers, and for all participants the Psychosocial Adjustment to Illness scale and the Brief COPE Inventory. Focus groups will be organised with some patients and family carers who will have received the ReNACE psychoeducational intervention and also with the healthcare professionals involved in its development.
An important gap exists in the knowledge and application of interventions with a psychosocial approach for people with PD and family carers as a whole. This study will promote this comprehensive approach in Primary Care, which will clearly contribute in the existing knowledge and could reduce the burden of PD for patients and family carers, and also in other long-term conditions.
NCT03129425 (ClinicalTrials.gov). Retrospectively registered on April 26, 2017.
帕金森病会在不同程度上逐渐限制患者的活动能力，因此家庭成员在患者护理中起着关键作用。然而，研究表明，初级保健中缺乏一种综合方法来应对患者及其家属所经历的困难和心理社会变化。本研究的目的是评估一种多学科心理教育干预措施在初级保健环境中对改善患者及其家庭照顾者应对技能、对帕金森病的心理社会适应以及生活质量的效果。
本研究为有对照组的准实验研究且采用混合方法，旨在评估一种多学科心理教育干预措施。根据研究功效计算，将招募100名帕金森病患者和100名家庭照顾者，并将他们分为两组。干预组将接受ReNACE心理教育干预。对照组将接受常规教育项目。该研究将在六个社区卫生中心进行。两组在三个时间点收集结果进行评估：基线时、干预结束后立即以及干预后6个月。结果将使用以下工具进行测量：患者的生活质量量表PDQ - 39和家庭照顾者的照顾者生活质量量表SQLC，所有参与者均使用疾病心理社会适应量表和简易应对方式问卷。将与一些接受过ReNACE心理教育干预的患者和家庭照顾者以及参与其开发的医护人员组织焦点小组讨论。
对于帕金森病患者及其家庭照顾者整体而言，心理社会干预方法的知识和应用存在重大差距。本研究将在初级保健中推广这种综合方法，这将显著丰富现有知识，并减轻患者和家庭照顾者的帕金森病负担，以及对其他长期疾病的负担。
NCT03129425（ClinicalTrials.gov）。于2017年4月26日追溯注册。
