Supported self-management as a model for end-of-life care in the setting of malignant bowel obstruction: A qualitative study

Cusimano, Maria C.; Sajewycz, Katrina; Nelson, Michelle; Jivraj, Nazlin; Lee, Yeh Chen; Bowering, Valerie; Oza, Amit M.; Lheureux, Stéphanie; Ferguson, Sarah E.

doi:10.1016/j.ygyno.2020.03.009

Cited by 13 publications

(34 citation statements)

References 34 publications

(56 reference statements)

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“… 34 Three other papers described the symptoms of malignant bowel obstruction in less detail but highlighted the debilitating and distressing impact that symptoms had on both patients and families, particularly symptoms of pain, nausea, and vomiting. 26 , 27 , 29 For example, nurses interviewed 27 in one study identified the far-reaching impacts of these distressing symptoms on not just the patient, but their family members also: “They have pain, discomfort, nausea, vomiting and transcends to the families.” Nurse, page 596 . 27 One patient described the pain they experienced as an endless, debilitating feeling “very painful.…”

Section: Resultsmentioning

confidence: 99%

Symptom burden and lived experiences of patients, caregivers and healthcare professionals on the management of malignant bowel obstruction: A qualitative systematic review

et al. 2022

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Background: Malignant bowel obstruction occurs in up to 50% of people with advanced ovarian and 15% of people with gastrointestinal cancers. Evaluation and comparison of interventions to manage symptoms are hampered by inconsistent evaluations of efficacy and lack of agreed core outcomes. The patient perspective is rarely incorporated. Aim: To synthesise the qualitative data regarding patient, caregiver and healthcare professionals’ views and experience of malignant bowel obstruction to inform the development of a core outcome set for the evaluation of malignant bowel obstruction. Design: A qualitative systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively ( https://www.crd.york.ac.uk/prospero , CRD42020176393). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO and Scopus databases were searched for studies published between 2010 and 2021. Reference lists were screened for further relevant publications, and citation tracking was performed. Results: Nine papers were included, reporting on seven studies which described the views and experiences of malignant bowel obstruction through the perspectives of 75 patients, 13 caregivers and 62 healthcare professionals. Themes across the papers included symptom burden, diverse experiences of interventions, impact on patient quality of life, implications and trajectory of malignant bowel obstruction, mixed experience of communication and the importance of realistic goals of care. Conclusion: Some of the most devastating sequelae of malignant bowel obstruction, such as pain and psychological distress, are not included routinely in its clinical or research evaluation. These data will contribute to a wider body of work to ensure the patient and caregiver perspective is recognised in the development of a core outcome set.

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Section: Resultsmentioning

confidence: 99%

Symptom burden and lived experiences of patients, caregivers and healthcare professionals on the management of malignant bowel obstruction: A qualitative systematic review

et al. 2022

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“…Lee et al provided patients with education on MBO symptoms and diagnosis, as well as frequent check-ins after discharge home [14]. A qualitative analysis showed that patients valued these interventions, and their daily concerns and changes in symptoms could be managed outpatient by an expert team, to prioritize their ability to be home [6].…”

Section: Discussionmentioning

confidence: 99%

“…Literature on MBO prognosis and interventions shows a median survival after MBO ranging between one and six months [1] [2] [3] [4] [5]. However, qualitative studies have shown that it is not always clear to ovarian cancer patients that a MBO is a turning point of disease trajectory and prognosis [6]. There is a gap between the medical data available and the patient understanding of MBO.…”

Section: Introductionmentioning

confidence: 99%

Gaps in patient-physician communication at the time of malignant bowel obstruction from recurrent gynecologic cancer: a qualitative study

Hoppenot

Hlubocky

Chor

et al. 2021

Support Care Cancer

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Purpose We sought to investigate the patient and physician approaches to malignant bowel obstruction (MBO) due to recurrent gynecologic cancer by 1) comparing patient and physician expectations and priorities during a new MBO diagnosis, and 2) highlighting factors that facilitate patient-doctor communication.Methods Patients were interviewed about their experience during an admission for MBO, and physicians were interviewed about their general approach towards MBO. Interviews were analyzed for themes using QDAMiner qualitative analysis software. The analysis utilized the framework analysis and used both predetermined themes and those that emerged from the data. ResultsWe interviewed 14 patients admitted with MBO from recurrent gynecologic cancer and 15 gynecologic oncologists. We found differences between patients and physicians regarding plans for next chemotherapy treatments, foremost priorities, communication styles, and end-of-life discussions. Both patients and physicians felt that the patient-physician communication was improved in situations of trust, understanding patient preferences, corroboration of information, and increased time spent with patients during and before the MBO.Conclusion Gaps in patient-physician communication could be targeted to improve the patient experience and physician counseling during a di culty diagnosis by focusing on education, symptoms, home support, nutrition, and end-of-life care.

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“…A qualitative study described the benefits of a model of supported self-management for women with advanced gynecological cancers and MBO attending out-patient clinics. Clear communication, counselling and referral to early palliative care were identified as important considerations [144]. A separate qualitative study with oncologists treating gynecological cancers identified that early palliative care referral was beneficial, particularly in situations where patients were not candidates for surgery [145].…”

Section: Psychosocial Supportmentioning

confidence: 99%

MASCC multidisciplinary evidence-based recommendations for the management of malignant bowel obstruction in advanced cancer

Madariaga

Lau²,

Ghoshal³

et al. 2022

Support Care Cancer

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Purpose To provide evidence-based recommendations on the management of malignant bowel obstruction (MBO) for patients with advanced cancer. Methods The Multinational Association for Supportive Care in Cancer (MASCC) MBO study group conducted a systematic review of databases (inception to March 2021) to identify studies about patients with advanced cancer and MBO that reported on the following outcomes: symptom management, bowel obstruction resolution, prognosis, overall survival, and quality of life. The review was restricted to studies published in English, but no restrictions were placed on publication year, country, and study type. As per the MASCC Guidelines Policy, the findings were synthesized to determine the levels of evidence to support each MBO intervention and, ultimately, the graded recommendations and suggestions. Results The systematic review identified 17,656 published studies and 397 selected for the guidelines. The MASCC study group developed a total of 25 evidence-based suggestions and recommendations about the management of MBO-related nausea and vomiting, bowel movements, pain, inflammation, bowel decompression, and nutrition. Expert consensus-based guidance about advanced care planning and psychosocial support is also provided. Conclusion This MASCC Guideline provides comprehensive, evidence-based recommendations about MBO management for patients with advanced cancer.

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Supported self-management as a model for end-of-life care in the setting of malignant bowel obstruction: A qualitative study

Cited by 13 publications

References 34 publications

Symptom burden and lived experiences of patients, caregivers and healthcare professionals on the management of malignant bowel obstruction: A qualitative systematic review

Symptom burden and lived experiences of patients, caregivers and healthcare professionals on the management of malignant bowel obstruction: A qualitative systematic review

Gaps in patient-physician communication at the time of malignant bowel obstruction from recurrent gynecologic cancer: a qualitative study

MASCC multidisciplinary evidence-based recommendations for the management of malignant bowel obstruction in advanced cancer

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