scholarly journals Trials and Tribulations: Palliative Care Trial Recruitment Approaches and Challenges

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 167-167
Author(s):  
Anna Rahman ◽  
Sindy Lomeli ◽  
Susan Enguidanos
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Primary Care Physicians ◽  
Controlled Trial ◽  
Trial Recruitment ◽  
Patient Identification ◽  
Patient Centered ◽  
Recruitment Methods ◽  
Home Based ◽  
Training And Support

Abstract In 2017, we received funding form the Patient-Centered Outcomes Research Institute to conduct a large, state-wide, randomized controlled trial to test the effectiveness of a home-based palliative care (HBPC) program within accountable care organizations. Participants were randomized to either HBPC or enhanced usual care, where physicians were provided added training and support in core palliative care practices. Originally, we planned to obtain patient referrals to the trial from primary care physicians, however we were unable to engage primary care physicians in patient identification processes. In this session we will describe the numerous trial modifications made to our trial recruitment methods and the success of each approach. Ultimately, after 20 months of trial recruitment, we had recruited just 28 patients and 10 of their caregivers. Findings from this terminated trial may inform other researchers in development of participant recruitment methods.

scholarly journals Patient, Caregiver, and Physician Barriers to Home-Based Palliative Care: Findings From a Terminated Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 167-167
Author(s):  
Susan Enguidanos ◽  
Stephanie Wladkowski
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Primary Care Physicians ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Insurance Company ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Abstract Despite two decades of palliative care services, there remains numerous barriers to patient and caregiver use of palliative care. For many years, policymakers believed lack of funding for palliative care was the primary obstacle to accessing palliative care services. In 2017, we undertook a randomized controlled trial to test the effectiveness of a home-based palliative care (HBPC) program within accountable care organizations and in partnership with an insurance company that covered the cost of HBPC. After 20 months, we had recruited just 28 patients. This symposium will: (1) describe outcomes from various approaches undertaken to engage primary care physicians and recruit patients and their caregivers into this trial; (2) present barriers to HBPC referral identified from a qualitative study of primary care physicians; (3) present findings from a qualitative study of patient- and caregiver-identified barriers to HBPC; (4) describe physician and patient barriers to research participation; and (5) discuss implications of these findings for researchers and healthcare providers. Information presented in this symposium will inform researchers and policy makers about challenges and facilitators to recruiting patients, caregivers, and physicians to participate in research studies as well as inform healthcare practitioners of potential obstacles to increasing patient access to HBPC.

scholarly journals WALKING THE TALK: ENGAGING PATIENTS AND CAREGIVERS AS COLLABORATORS IN PALLIATIVE CARE RESEARCH

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S274-S274
Author(s):  
Anna N Rahman ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Care Program ◽  
Assessment Instruments ◽  
Patient Centered ◽  
Engagement Strategies ◽  
Home Based ◽  
Implementation And Dissemination ◽  
The Impact ◽  
Research Assistants

Abstract Palliative care is inherently patient directed and family oriented. Given this, it is especially important that patients and caregivers participate in developing new services intended to meet their needs. Our experience with conducting a controlled trial of home-based palliative care demonstrates this point. This poster will describe the implementation and dissemination decisions that patient and caregiver stakeholders guided during a comparative effectiveness trial of palliative care. It also will present strategies for engaging stakeholders and identify the impact of these strategies on continuous study improvement. For the study, we convened an advisory committee (AC), which included eight patients and caregivers among its 34 members. These eight partners in particular helped us identify meaningful patient- and caregiver-reported outcome measures, Throughout the study’s 2.5-year period, they offered suggestions that influenced the tone and topics addressed in quarterly AC meetings. They also helped refine the study’s patient and caregiver assessment instruments by roleplaying with our research assistants. When we launched a Google group to promote discussion among AC members, patient and caregiver stakeholders were especially forthcoming. They identified gaps in care and consumer understanding of palliative care that we otherwise would have overlooked. Of note, our stakeholders provided input on how to best to introduce a new palliative care program to patients. These engagement strategies create feedback loops that open new opportunities for continuously improving research. Moreover, engagement of patients and caregivers in research planning and implementation provides important and otherwise overlooked perspectives while ensuring a patient-centered focus, consistent with palliative care goals.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

scholarly journals Effect of home-based specialised palliative care and dyadic psychological intervention on caregiver anxiety and depression: a randomised controlled trial

2018 ◽  
Vol 119 (11) ◽  
pp. 1307-1315 ◽  
Author(s):  
Annika von Heymann-Horan ◽  
Pernille Bidstrup ◽  
Mai-Britt Guldin ◽  
Per Sjøgren ◽  
Elisabeth Anne Wreford Andersen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Randomised Controlled Trial ◽  
Psychological Intervention ◽  
Controlled Trial ◽  
Anxiety And Depression ◽  
Home Based ◽  
Randomised Controlled ◽  
Caregiver Anxiety

scholarly journals Advantages and challenges in using telehealth for home-based palliative care: A systematic mixed studies review protocol (Preprint)

2020 ◽  
Author(s):  
Simen A Steindal ◽  
Andréa Aparecida Goncalves Nes ◽  
Tove E. Godskesen ◽  
Susanne Lind ◽  
Alfhild Dhle ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Delivery ◽  
Patient Centered ◽  
Care Services ◽  
Home Based ◽  
Mixed Studies Review ◽  
Palliative Care Services ◽  
Meta Analyses ◽  
Systematic Mixed Studies Review ◽  
At Home

BACKGROUND Due to the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth for home-based palliative care. OBJECTIVE The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients’ use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients. METHODS This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data and assess methodological quality. The data will then be analyzed using thematic synthesis. RESULTS We described the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021. CONCLUSIONS Following the ethos of patient-centered palliative care, this systematic mixed studies review could contribute recommendations for practice and policy enabling the development of telehealth applications and services that align with patients’ preferences and needs when using telehealth applications and services at home.

scholarly journals What are the opportunities for cancer care and related research in primary care? A qualitative study of the views of patients, carers, and practice staff

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703505
Author(s):  
Joseph Clark ◽  
Elvis Amoakwa ◽  
John Blenkinsopp ◽  
Florence Reedy ◽  
Miriam Johnson
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
Cancer Care ◽  
Information Needs ◽  
Controlled Trial ◽  
Unmet Need ◽  
Care Staff ◽  
Trial Participation

BackgroundResearch to identify the role of primary care in cancer care is important. However, trials in primary care are difficult.AimTo understand how patients, families, and primary care clinicians view their role in cancer care and identify opportunities for cancer primary care research.MethodQualitative study embedded within a feasibility cluster randomised controlled trial of a primary care based needs assessment intervention. The Supportive Cancer Needs Survey (SCNS) was the main outcome. In-depth interviews with patients/carers and focus groups with primary care staff explored views on cancer care and trial participation. Data were recorded, transcribed verbatim, and analysed thematically by three independent researchers.ResultsFifteen cancer patients and three carers were interviewed and four focus groups (n = 11) were conducted. Three themes were generated satisfaction with current care; key time-points for improved cancer care; and information and research. Satisfaction with current care among patients was high in spite of 72% reporting at least one moderate-high unmet need at baseline. Most patients undergoing cancer treatment were unsure when to access primary care. Patients and carers highly valued proactive contact from their practice following diagnosis though this was uncommon. Post-oncology discharge was a key time-point for information needs and support for patients. Patients were reluctant to consider palliative care in spite of palliative care needs. Some felt therapeutic benefit from completing study measures.ConclusionPatients are satisfied with cancer primary care despite unmet needs. Palliative care is poorly understood by many who may benefit. Research participation may benefit some patients.

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