Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention

ObjectiveTo develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)).MethodsFACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed.ResultsParents were mean age 40 years, and children 7 years. Children’s diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial.ConclusionsFACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.

Download Full-text

Introduction to a Novel Palliative Care Intervention for Family Caregivers of Children and Adolescents Living with Rare Diseases (TH308)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2018.12.037 ◽

2019 ◽

Vol 57 (2) ◽

pp. 367

Author(s):

Sarah Friebert ◽

Karen Fratantoni ◽

Lori Wiener ◽

Jennifer Needle ◽

Jamie Fraser ◽

...

Keyword(s):

Palliative Care ◽

Children And Adolescents ◽

Family Caregivers ◽

Rare Diseases ◽

Care Intervention

Download Full-text

Efforts by the National Academy for State Health Policy

Innovation in Aging ◽

10.1093/geroni/igab046.674 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 178-179

Author(s):

Wendy Fox-Grage

Keyword(s):

Palliative Care ◽

Health Policy ◽

Family Caregivers ◽

Family Caregiver ◽

Family Caregiving ◽

Advisory Council ◽

State Health ◽

State Health Policy ◽

Advance Care ◽

Services And Supports

Abstract The National Academy for State Health Policy hosts both the RAISE Act Family Caregiving Resource and Dissemination Center and the Hub for State Strategies to Build and Support Palliative Care, with generous funding from The John A. Hartford Foundation. The value of supporting individuals with serious illness and complex conditions as well as their family caregivers through telehealth, care management, advance care planning, and other added family caregiver supports has been especially evident during the COVID-19 pandemic. Policymakers are now grappling with how to restructure hard-hit health care and long-term services and supports systems to better support these individuals and their family caregivers. The State Hub provides concrete resources for states working to implement and expand high-quality palliative care, and the RAISE Center is assisting the Family Caregiving Advisory Council with creating the country’s first national Family Caregiver Strategy.

Download Full-text

Identifying Palliative Care Needs in Assisted Living

Innovation in Aging ◽

10.1093/geroni/igaa057.2854 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 788-788

Author(s):

Daniel David ◽

Abraham Brody ◽

Tina Sadarangani ◽

Bei Wu ◽

Tara Cortez

Keyword(s):

Palliative Care ◽

Assisted Living ◽

Unmet Needs ◽

Care Needs ◽

Code Status ◽

Care Services ◽

Palliative Care Services ◽

Advance Care ◽

Palliative Care Needs

Abstract Many residents of Assisted Living (AL) confront serious illness and therefore might benefit from greater access to Palliative Care Services to improve quality of life. We surveyed resident records and AL nursing staff to identify patients in need of Palliative Care. Preliminary findings showed that nurses predicted 23% would not be alive and 49% would no longer live in AL. A majority of residents were over the age of 90, yet 30% did not have a reported code status. These findings suggest that a substantial portion of AL residents may have unmet needs with respect to palliative care. Future interventions are needed to support advance care planning conversations and make palliative care more accessible to this population.

Download Full-text

Feasibility of hospital-initiated non-facilitator assisted advance care planning documentation for patients with palliative care needs

BMC Palliative Care ◽

10.1186/s12904-018-0331-3 ◽

2018 ◽

Vol 17 (1) ◽

Cited By ~ 4

Author(s):

Maaike Kok ◽

Gertruud F. M. van der Werff ◽

Jenske I. Geerling ◽

Jaap Ruivenkamp ◽

Wies Groothoff ◽

...

Keyword(s):

Palliative Care ◽

Advance Care Planning ◽

Care Planning ◽

Care Needs ◽

Advance Care ◽

Palliative Care Needs

Download Full-text

HANDLE WITH CARE: ADVANCE CARE PLANNING FOR CHILDREN AND YOUNG PEOPLE WITH PALLIATIVE CARE NEEDS

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2013-000453b.12 ◽

2013 ◽

Vol 3 (1) ◽

pp. 128.2-128 ◽

Cited By ~ 2

Author(s):

S Mitchell ◽

J Dale

Keyword(s):

Palliative Care ◽

Young People ◽

Advance Care Planning ◽

Care Planning ◽

Care Needs ◽

Children And Young People ◽

Advance Care ◽

Palliative Care Needs

Download Full-text

Routine assessment of unmet needs in individuals with advanced cancer and their caregivers: A qualitative study of the palliative care needs assessment tool (PC-NAT)

Journal of Psychosocial Oncology ◽

10.1080/07347332.2017.1382645 ◽

2017 ◽

Vol 36 (1) ◽

pp. 82-96 ◽

Cited By ~ 2

Author(s):

Sylvie Lambert ◽

Thomas Bellamy ◽

Afaf Girgis

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

Needs Assessment ◽

Advanced Cancer ◽

Unmet Needs ◽

Assessment Tool ◽

Care Needs ◽

Routine Assessment ◽

Palliative Care Needs

Download Full-text

Pilot Randomized Trial of a Transdisciplinary Geriatric and Palliative Care Intervention for Older Adults With Cancer

Journal of the National Comprehensive Cancer Network ◽

10.6004/jnccn.2019.7386 ◽

2020 ◽

Vol 18 (5) ◽

pp. 591-598

Author(s):

Ryan D. Nipp ◽

Brandon Temel ◽

Charn-Xin Fuh ◽

Paul Kay ◽

Sophia Landay ◽

...

Keyword(s):

Older Adults ◽

Palliative Care ◽

Usual Care ◽

Pilot Trial ◽

Symptom Burden ◽

Medium Effect ◽

Care Needs ◽

Care Intervention ◽

Cancer Types

Background: Oncologists often struggle with managing the unique care needs of older adults with cancer. This study sought to determine the feasibility of delivering a transdisciplinary intervention targeting the geriatric-specific (physical function and comorbidity) and palliative care (symptoms and prognostic understanding) needs of older adults with advanced cancer. Methods: Patients aged ≥65 years with incurable gastrointestinal or lung cancer were randomly assigned to a transdisciplinary intervention or usual care. Those in the intervention arm received 2 visits with a geriatrician, who addressed patients’ palliative care needs and conducted a geriatric assessment. We predefined the intervention as feasible if >70% of eligible patients enrolled in the study and >75% of eligible patients completed study visits and surveys. At baseline and week 12, we assessed patients’ quality of life (QoL), symptoms, and communication confidence. We calculated mean change scores in outcomes and estimated intervention effect sizes (ES; Cohen’s d) for changes from baseline to week 12, with 0.2 indicating a small effect, 0.5 a medium effect, and 0.8 a large effect. Results: From February 2017 through June 2018, we randomized 62 patients (55.9% enrollment rate [most common reason for refusal was feeling too ill]; median age, 72.3 years; cancer types: 56.5% gastrointestinal, 43.5% lung). Among intervention patients, 82.1% attended the first visit and 79.6% attended both. Overall, 89.7% completed all study surveys. Compared with usual care, intervention patients had less QoL decrement (–0.77 vs –3.84; ES = 0.21), reduced number of moderate/severe symptoms (–0.69 vs +1.04; ES = 0.58), and improved communication confidence (+1.06 vs –0.80; ES = 0.38). Conclusions: In this pilot trial, enrollment exceeded 55%, and >75% of enrollees completed all study visits and surveys. The transdisciplinary intervention targeting older patients’ unique care needs showed encouraging ES estimates for enhancing patients’ QoL, symptom burden, and communication confidence.

Download Full-text

Development of an aid to decision-making form (ADF) integrated into a major institutional program in oncology: A tool to support care goal identification.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.e18646 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. e18646-e18646

Author(s):

Laurence Vigouret-Viant ◽

Clemence Legoupil ◽

Aurelie Bardet ◽

Celine Laurent ◽

Michel Ducreux ◽

...

Keyword(s):

Decision Making ◽

Palliative Care ◽

Intensive Care ◽

Performance Status ◽

Medical Decision ◽

Cancer Center ◽

P Value ◽

Ecog Performance Status ◽

Advance Care ◽

Aggressive Care

e18646 Background: For cancer patients, life-threatening complications may be difficult to anticipate, leading to complex medical decision-making processes. Since 2015, the Gustave Roussy Cancer Center has implemented a major institutional program including a Decision-Aid Form (ADF), outlining the anticipation of appropriate care for patient in case of worsening evolution. Methods: Between January and May 2017, all patients transferred from Site 1 to Site 2 of the hospital were prospectively included. In this study, we assessed the acceptability of the ADF, its using and its impact on the patient’s becoming. Results: Out of 206 patients included, 89.3% had an ADF. The planned stratification of care was notified in practically all cases. Conversely, the involvement of the palliative care team was notified in only 29% of the ADF. The value of the WHO/ECOG Performance Status was limited, varying between physicians. Finally, the field “information for patients and relatives” was insufficiently completed. Although a possible transfer to Intensive Care Unit was initially proposed in two-thirds of the patients, the majority (76%) of the 35 patients experiencing an acute event received exclusive medical or palliative care. The level of therapeutic commitment suggested by the ADF was never upgraded, and often revised towards less aggressive care, and especially without excess mortality for the patients who were initially designated to be eligible for intensive care. Moreover, the patient's survival at 6 months seems to be correlated with the anticipated level of care recorded on the FAD (Log-rank P value < 0,0001). Conclusions: The results of our study suggest that setting up a care stratification file in advance is possible in a French cultural setting and it could be helpful for clarifying prognosis assessment. To achieve complete acculturation, our extensive institutional program remains a cornerstone for the development of advance care planning. Since 2017, this program has widely spreaded ADF which is now integrated into the electronic medical record. Each physician can complete and modify the patient's ADF at any stage of the patient's disease course.

Download Full-text

Preferences on the Timing of Initiating Advance Care Planning and Withdrawing Life-Sustaining Treatment between Terminally-Ill Cancer Patients and Their Main Family Caregivers: A Prospective Study

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17217954 ◽

2020 ◽

Vol 17 (21) ◽

pp. 7954

Author(s):

Cheng-Pei Lin ◽

Jen-Kuei Peng ◽

Ping-Jen Chen ◽

Hsien-Liang Huang ◽

Su-Hsuan Hsu ◽

...

Keyword(s):

Family Caregivers ◽

Advance Care Planning ◽

Medical Decision Making ◽

Terminally Ill ◽

Medical Decision ◽

Care Planning ◽

Terminally Ill Cancer Patients ◽

Life Sustaining Treatment ◽

Advance Care ◽

A Prospective Study

Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan. Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis. Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients’ frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress. Conclusion: Patient dyads’ preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people’s medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia–Pacific region.

Download Full-text