Patient and caregiver experiences with advanced cancer care: a qualitative study informing the development of an early palliative care pathway

Ahmed, Sadia; Naqvi, Syeda Farwa; Sinnarajah, Aynharan; McGhan, Gwen; Simon, Jessica; Santana, Maria

doi:10.1136/bmjspcare-2020-002578

Cited by 8 publications

(11 citation statements)

References 27 publications

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“…The CALM group reported greater perceived benefit on all CEQ items except discussion of cancer and treatment concerns. Most group differences reached significance at 6 months and presumably reflect the different emphases of CALM and usual care: whereas CALM is focused on psychological adaptation and response to the challenges of advanced disease, routine advanced cancer clinic visits focus on cancer-related symptoms and treatment 35 36. The unique factor-structure and internal-consistency patterns of the discussion of cancer and treatment concerns item relative to other CEQ items further indirectly reflect these different intervention targets.…”

Section: Discussionmentioning

confidence: 99%

Clinical evaluation questionnaire in advanced cancer: a psychometric study of a novel measure of healthcare provider interactions

Vries

Mah

Malfitano

et al. 2022

BMJ Support Palliat Care

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ObjectivesThe Clinical Evaluation Questionnaire (CEQ) is a patient-reported experience measure (PREM) that assesses the perceived benefit of therapeutic interactions of patients with advanced cancer with their healthcare providers concerning issues relevant to their illness. It was developed for a randomised controlled trial of Managing Cancer and Living Meaningfully (CALM), a brief supportive-expressive therapy for patients with advanced cancer. The present study evaluates the preliminary psychometric properties of the CEQ.MethodPatients in the CALM and usual care groups completed the CEQ 3 (n=195) and 6 (n=186) months after randomisation. The CEQ’s internal consistency, factor structure and concurrent validity were evaluated, and CEQ scores in the treatment groups were compared.ResultsThe CEQ demonstrated high internal consistency for both treatment arms (Cronbach’s α=0.94 to 0.95), and a single factor was consistently found in exploratory factor analyses. CEQ scores correlated significantly with satisfaction with the relationship with healthcare providers (r=0.23 to 0.61, p≤0.02) and life completion (r=0.24 to 0.37, p≤0.02) in both groups and with spiritual well-being in the CALM group (meaning: r=0.23 to 0.24, p=0.01 to 0.02; faith: r=0.24 to 0.34, p=0.001 to 0.02). The CALM group showed higher CEQ total scores than usual care at 6 months (CALM: 18.19±6.59; usual care: 14.36±7.67, p<0.001).ConclusionsThe CEQ is a reliable and valid PREM of the benefit perceived by patients with advanced cancer from their interactions with healthcare providers. Further study is needed to establish its value as a measure of perceived intervention benefit across different clinical and research settings.

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Section: Discussionmentioning

confidence: 99%

Clinical evaluation questionnaire in advanced cancer: a psychometric study of a novel measure of healthcare provider interactions

Vries

Mah

Malfitano

et al. 2022

BMJ Support Palliat Care

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“…Renaming or reframing the meaning have been suggested as potential strategies to address negative perceptions of PC. [ 31 , 32 , 33 ]. Interestingly, adding to these known challenges, we found that professional role is a factor, with concerns about patients’ negative perceptions of PC perceived as an even greater barrier by nurses, allied healthcare professionals, and radiation therapists than physicians.…”

Section: Discussionmentioning

confidence: 99%

Oncology Clinicians’ Challenges to Providing Palliative Cancer Care—A Theoretical Domains Framework, Pan-Cancer System Survey

et al. 2021

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Despite the known benefits, healthcare systems struggle to provide early, integrated palliative care (PC) for advanced cancer patients. Understanding the barriers to providing PC from the perspective of oncology clinicians is an important first step in improving care. A 33-item online survey was emailed to all oncology clinicians working with all cancer types in Alberta, Canada, from November 2017 to January 2018. Questions were informed by Michie’s Theoretical Domains Framework and Behaviour Change Wheel (BCW) and queried (a) PC provision in oncology clinics, (b) specialist PC consultation referrals, and (c) working with PC consultants and home care. Respondents (n = 263) were nurses (41%), physicians (25%), and allied healthcare professionals (18%). Barriers most frequently identified were “clinicians’ limited time/competing priorities” (64%), “patients’ negative perceptions of PC” (63%), and clinicians’ capability to manage patients’ social issues (63%). These factors mapped to all three BCW domains: motivation, opportunity, and capability. In contrast, the least frequently identified barriers were clinician motivation and perceived PC benefits. Oncology clinicians’ perceptions of barriers to early PC were comparable across tumour types and specialties but varied by professional role. The main challenges to early integrated PC include all three BCW domains. Notably, motivation is not a barrier for oncology clinicians; however, opportunity and capability barriers were identified. Multifaceted interventions using these findings have been developed, such as tip sheets to enhance capability, reframing PC with patients, and earlier specialist PC nursing access, to enhance clinicians’ use of and patients’ benefits from an early PC approach.

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“…We employed semi-structured telephone interviews. We chose telephone interviews because they were suggested by patients who found comfort and convenience sharing their experiences over the phone (Ahmed et al, 2020). The interview guide was developed in collaboration with palliative care specialist clinician-researchers and three patient and family advisors on the team.…”

Section: Methodsmentioning

confidence: 99%

“…We compared these interviews to those conducted by our team with another cohort of patients living with advanced colorectal cancer receiving care prior to implementation of the early palliative care pathway (Ahmed et al, 2020). Demographic details of both interviews and the comparison of the experiences before and after implementation of the early palliative care pathway are summarized in Table 3.…”

Section: Comparison With Patient Experiences Prior To Palliative Care...mentioning

confidence: 99%

“…Within our cancer center, an early palliative care pathway was implemented in 2019 for advanced colorectal cancer, led by the addition of specialist palliative care nurse consultations in addressing the following components: understanding of illness and coping with advanced cancer, advance care planning and shared decision making, attending to symptoms and functional status, and coordination of care (Figure 1) (Temel et al, 2010). This study was a follow up to our previous publication that informed the development of the early palliative care pathway, through understanding the experiences of advanced colorectal cancer patients as they received standard oncology care (without early palliative care supports) (Ahmed et al, 2020). We identified gaps in their cancer care that included poor communication with patients and among healthcare providers, misunderstanding of palliative care, and lack of advance care planning discussions (Ahmed et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

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Patient & Caregiver Experiences: Qualitative Study Comparison Before and After Implementation of Early Palliative Care for Advanced Colorectal Cancer

et al. 2022

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Background The Palliative Care Early and Systematic (PaCES) program implemented an early palliative care pathway for advanced colorectal cancer patients in January 2019, to increase specialist palliative care consultation and palliative homecare referrals more than three months before death. This study aimed to understand the experience of patients with advanced colorectal cancer and family caregivers who received early palliative care supports from a specialist palliative care nurse and compared those experiences with participants who experienced standard oncology care prior to implementation of early palliative care. Methods This was a qualitative and patient-oriented study. We conducted semi-structured telephone interviews with two cohorts of patients with advanced colorectal cancer before and after implementation of an early palliative care pathway. We conducted a thematic analysis of the transcripts guided by a Person-Centred Care Framework. Results Seven patients living with advanced colorectal cancer and five family caregivers who received early palliative care supports expressed that visits from their early palliative care nurse was helpful, improved their understanding of palliative care, and improved their care. Four main themes shaped their experience of early palliative care: care coordination, perception of palliative care & advance care planning, coping with advanced cancer, and patient and family engagement. These findings were compared with experiences of 15 patients and seven caregivers prior to pathway implementation. Conclusion An early palliative care pathway can improve advanced cancer care, and improve understanding and acceptance of early palliative care. This work was conducted in the context of colorectal cancer but may have relevance for the care of other advanced cancers.

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Patient and caregiver experiences with advanced cancer care: a qualitative study informing the development of an early palliative care pathway

Cited by 8 publications

References 27 publications

Clinical evaluation questionnaire in advanced cancer: a psychometric study of a novel measure of healthcare provider interactions

Clinical evaluation questionnaire in advanced cancer: a psychometric study of a novel measure of healthcare provider interactions

Oncology Clinicians’ Challenges to Providing Palliative Cancer Care—A Theoretical Domains Framework, Pan-Cancer System Survey

Patient & Caregiver Experiences: Qualitative Study Comparison Before and After Implementation of Early Palliative Care for Advanced Colorectal Cancer

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