Abstract:
CONTEXT:Patients living with cystic fibrosis (CF) report impaired quality of life. Little is known about unmet supportive care needs among adults living with CF and how they are associated with demographic characteristics. OBJECTIVES:The primary objective of this study was to identify associations between demographic variables and unmet supportive care needs regarding anxiety, sadness, pain and uncertainty about the future of living with CF. METHODS:We recruited 165 adults with CF from a single academic medical centre to complete a brief demographic survey and the Supportive Care Needs Survey (SCNS-34), a validated self-reported needs assessment that measures the prevalence of and preferences for support for 34 needs that commonly occur in patients with serious illness. RESULTS:Approximately half of the participant sample was male, with a median age of 29 years, varying income levels and a range of lung disease severity. We found statistically significant associations between insufficient income and increased odds of reporting need for support regarding anxiety (OR: 6.48; 95% CI 2.08 to 20.2), sadness (OR: 6.15; 95% CI 2.04 to 18.5), pain (OR: 7.06; 95% CI 2.22 to 22.4) and worries surrounding uncertainty about the future (OR: 3.43; 95% CI 1.18 to 9.99). CONCLUSION:Adults with CF report significant unmet needs for support in several physical and emotional domains. Many of these domains were associated with demographic characteristics, most notably, income. Our findings underscore the importance of developing treatment approaches that are sensitive to patient demographics when addressing unmet supportive care needs among adults with CF.
journal_name
BMJ Support Palliat Carejournal_title
BMJ supportive & palliative careauthors
Obregon LL,Jeong K,Hoydich ZP,Yabes J,Pilewski J,Richless C,Moreines LT,Dellon EP,Goss CH,Arnold RM,Kavalieratos Ddoi
10.1136/bmjspcare-2019-001819subject
Has Abstractpub_date
2019-08-31 00:00:00eissn
2045-435Xissn
2045-4368pii
bmjspcare-2019-001819pub_type
杂志文章abstract:OBJECTIVES:Loss of appetite is prevalent in palliative care and distressing for patients and families. Therapies include corticosteroids or progestogens. This study explores the net effect of dexamethasone on anorexia. METHODS:Prospective data were collected when dexamethasone was started for anorexia as part of routi...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001037
更新日期:2016-09-01 00:00:00
abstract:OBJECTIVES:As a rose geranium in sesame oil spray product has been anecdotally noted to improve nasal vestibulitis symptoms, this study was designed to assess whether patients with nasal vestibulitis associated with cancer-directed therapy experienced symptomatic improvements from it. METHODS:Patients with breast canc...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001569
更新日期:2020-12-01 00:00:00
abstract:INTRODUCTION:The incidence of some fatal diseases, including HIV/AIDS, accompanied by depression has become a significant concern in developed, developing and underdeveloped countries. A great deal of time and money are spent on controlling and reducing the complications of this infection across the world. Accordingly,...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,meta分析
doi:10.1136/bmjspcare-2019-001952
更新日期:2019-12-01 00:00:00
abstract:BACKGROUND:Patient held records need to be evaluated in palliative care settings. OBJECTIVES:To evaluate how patients, families and professionals in a specialist palliative setting use a patient held record created through close consultation with patients and carers. METHODS:A mixed methods prospective longitudinal c...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001589
更新日期:2018-08-18 00:00:00
abstract:BACKGROUND:Communication about the end of life is especially important in the family context, as patients and their families are considered as the care unit in palliative care. Open end-of-life communication can positively affect medical, psychological and relational outcomes during the dying process for patient and fa...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2020-002219
更新日期:2020-08-27 00:00:00
abstract:BACKGROUND:Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are essential to inform effective, efficient and equitable health services. AIM:...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002449
更新日期:2020-10-13 00:00:00
abstract::There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2011-000057
更新日期:2011-09-01 00:00:00
abstract:OBJECTIVES:Impending death is poorly recognised. Many undergraduate healthcare professionals will not have experience of meeting or caring for someone who is dying. As death can occur in any setting, at any time, it is vital that all healthcare students, regardless of the setting they go on to work in, have end-of-life...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-002025
更新日期:2019-11-20 00:00:00
abstract:OBJECTIVE:Evaluate the internal consistency and temporal stability of advance directives (ADs) generated by an interactive, online computer program. METHODS:33 participants completed the program at three visits, 2 weeks apart. Agreement rates were calculated for the General Wishes component of the AD. The test-retest ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2014-000814
更新日期:2017-03-01 00:00:00
abstract:BACKGROUND:A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited. AIM:This study sought to understand concepts related to the motor neuron disease caregiver experience ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-001057
更新日期:2019-12-01 00:00:00
abstract:PURPOSE:Advanced pancreatic cancer has a universally poor survival rate. Patients frequently develop malabsorption that requires pancreatic enzyme replacement therapy (PERT). This study explores the experience of patient engagement with PERT and how the medication is taken and tolerated. METHODS:Participants with adva...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-002153
更新日期:2020-03-22 00:00:00
abstract::Fentanyl has a low molecular weight and is lipophilic making it suitable for transdermal administration. However, multiple factors appear to lead to interindividual variation in absorption via this route. Here we describe an unusual case where a patient was found to have twelve 100 μg/hour fentanyl patches in situ whi...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2018-001652
更新日期:2019-12-01 00:00:00
abstract:INTRODUCTION:The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe. METHODS:This online survey aimed to look at collaboration across Europe, using the links of the European Association for P...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002322
更新日期:2020-07-10 00:00:00
abstract:BACKGROUND:Recruitment and training of Companion Volunteers has developed out of a Companion Sitter Training Programme begun in 2010. (Scottish Journal of Healthcare Chaplaincy Vol 15. No 1, 2012). This programme was established to support patients emotionally and spiritually. While other services were available to off...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.64
更新日期:2015-04-01 00:00:00
abstract:BACKGROUND:A diagnosis of cancer and anticipated death of a loved one has a significant impact on the whole family. Research has mainly focused on carers, with little emphasis on the wider, long-term implications. AIM:To explore the cancer beliefs of patients with advanced cancer and their relatives. The focus was on ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.74
更新日期:2015-04-01 00:00:00
abstract:BACKGROUND:Compared with the current inpatient consultation model, a novel corounding model of care whereby palliative specialists round with oncology teams, increases healthcare collaboration and may improve quality of care for inpatients. Whether this translates to better pain control for patients is unexplored. OBJ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002540
更新日期:2020-12-18 00:00:00
abstract:OBJECTIVES:To investigate the body composition and dietary intake in the patients with head and neck cancer (HNC) during radiotherapy (RT), and explore the relationship between them. METHODS:This was a prospective, longitudinal observational study. Adult patients with HNC undergoing RT between March 2017 and August 20...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002359
更新日期:2020-09-11 00:00:00
abstract:BACKGROUND:Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals' perspectives. METHODS:A survey st...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2019-002148
更新日期:2020-06-19 00:00:00
abstract:BACKGROUND:There has been a dramatic increase in liver disease over recent decades, with morbidity and mortality rates predicted to rise significantly. In order to effectively support this growing patient population we need to understand the experiences, key issues and priorities of people living and dying with advance...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2012-000435
更新日期:2015-12-01 00:00:00
abstract:BACKGROUND:Many scholars claim that recent changes to Chinese society since economic reform have challenged longstanding forms of informal social care, such as filial piety. For instance there is a societal tension at work in contemporary Chinese society today. On the one hand decreasing co-residence in multi-generatio...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.2
更新日期:2015-04-01 00:00:00
abstract:BACKGROUND:Randomised controlled trials (RCTs) of palliative care interventions are challenging to conduct and evaluate. Tools used to judge the quality of RCTs do not account for the complexities of conducting research in seriously ill populations and may artificially downgrade confidence in palliative care research. ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002539
更新日期:2020-11-18 00:00:00
abstract:CONTEXT:Patients with chronic cancer pain frequently suffer severe exacerbations of pain intensity which are difficult to control adequately via pharmaceutical management. Management of these episodes of breakthrough pain (BTP) presents a challenge both to the physician and the patient, and supplemental 'rescue' doses ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2011-000066
更新日期:2011-12-01 00:00:00
abstract:BACKGROUND:Over time, palliative care has become "professionalised", placing a burden on health care systems to manage the suffering of individuals and families with advancing, life-limiting illness. The need to develop resources, infrastructure and policy to enhance the capacity for communities to facilitate and suppo...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.58
更新日期:2015-04-01 00:00:00
abstract:OBJECTIVES:To estimate past trends and future projection of adult palliative care needs in Malaysia. METHODS:This is a population-based secondary data analysis using the national mortality registry from 2004 to 2014. Past trend estimation was conducted using Murtagh's minimum and maximum methods and Gómez-Batiste's me...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2020-002283
更新日期:2020-08-21 00:00:00
abstract:BACKGROUND:The key challenge for most developed countries is meeting the needs of our ageing population, in particular, those nearing the end of their lives - population-based end-of-life care. Building on a public health approach to meet needs of an area-wide population, and a practical approach of enabling generalist...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.18
更新日期:2015-04-01 00:00:00
abstract:BACKGROUND:Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregiver...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000906.8
更新日期:2015-04-01 00:00:00
abstract:OBJECTIVES:The decision to refer a patient to palliative care is complex and often highly variable between medical specialists. In this paper, we examine medical specialists' motivations and triggers underpinning decision-making around referral to palliative care in order to facilitate improvements in referral practice...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000376
更新日期:2014-09-01 00:00:00
abstract:BACKGROUND:Managing Cancer And Living Meaningfully (CALM) is a brief individual psychotherapy for patients with advanced cancer. In an intervention-only phase 2a trial, CALM showed promising results, leading to the present 2b pilot, which introduces procedures for randomisation and improved rigour in preparation for a ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2015-000866
更新日期:2019-06-01 00:00:00
abstract:BACKGROUND:Patients with heart failure often receive little supportive or palliative care. 'Better Together' was a 2-year pilot study of a palliative care service for patients with advanced congestive heart failure (CHF). OBJECTIVE:To determine if the intervention made it more likely that patients would be cared for a...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章
doi:10.1136/bmjspcare-2012-000251
更新日期:2013-03-01 00:00:00
abstract:OBJECTIVES:To report the results of a combined case series analysis of subcutaneous levetiracetam (Keppra) for the management of seizures in palliative care patients. METHODS:A comprehensive literature review on the use of subcutaneous levetiracetam was performed, and these data were combined with a prospective observ...
journal_title:BMJ supportive & palliative care
pub_type: 杂志文章,评审
doi:10.1136/bmjspcare-2016-001261
更新日期:2018-06-01 00:00:00