Patient and caregiver perspectives on managing pain in advanced cancer: A qualitative longitudinal study

Hackett, Julia; Godfrey, Mary; Bennett, Mike

doi:10.1177/0269216316628407

Cited by 66 publications

(68 citation statements)

References 31 publications

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“…In fact, the symptoms discussed most frequently by our participants—pain, fatigue and abnormal bowel movements—were similar to the top three severe symptoms revealed in the review—fatigue, loss of appetite and pain. As would be expected, our finding that patients associated changes in their symptoms with the worsening of their illness had also been found in other studies (Hackett, Godfrey, & Bennett, ; Luckett et al., ).…”

Section: Discussionsupporting

confidence: 91%

Symptom experiences in patients with advanced pancreatic cancer as reported during healthcare encounters

et al. 2018

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Symptom management is one of the primary goals of care for advanced pancreatic cancer (APC) patients. The purpose of this study was to examine recorded healthcare encounters to better understand the symptom experiences of APC patients as told to healthcare providers (HCP). In this qualitative descriptive study, content analysis was used to analyze 37 transcripts of audio-recorded, naturally occurring encounters among APC patients, caregivers, and HCP. Transcripts were drawn from a larger randomized controlled study, which recruited advanced cancer patients and caregivers across the United States. Findings revealed that APC patients and caregivers experienced multiple troubling symptoms. Thirty-seven APC patients and 34 caregivers discussed 10 types of symptoms: pain, fatigue, abnormal bowel movements, decreased appetite, nausea and vomiting, sleeping problems, neurological problems, skin problems, psychological distress, and taste changes. The patients and caregivers discussed various aspects of the symptoms, including the nature of the symptoms, how the symptoms affected their lives, and the way they managed symptoms. Some symptoms were described as severe, life-changing, and highly distressing. HCP should be attuned to the wide variety of ways in which APC patients experience, manage, and live with symptoms. A systematic approach to address symptoms during encounters may improve care and efficiency.

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Section: Discussionsupporting

confidence: 91%

Symptom experiences in patients with advanced pancreatic cancer as reported during healthcare encounters

et al. 2018

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“…Longitudinal interview studies reveal that pain is very dynamic and complex for patients, and that pain control is often a trial and error process that requires continuous work [25]. Neither pain relief nor expertise in pain management is secured once and for all.…”

Section: Meaningful Outcomes For Patientsmentioning

confidence: 99%

“…Most patients seem to determine whether their pain is controlled by whether or not they can perform activities or tasks and maintain relationships with family or friends. This outcome is what determines themselves as individuals [22,25,31]. Bender et al [2] identified that patients are keen to understand the cause of their cancer pain, what to expect, options for pain control (including addressing concerns about strong opioids), and how to cope with cancer pain including talking with others and finding help.…”

Section: Meaningful Outcomes For Patientsmentioning

confidence: 99%

Mechanism-based cancer-pain therapy

Bennett

2017

Pain

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Cancer pain remains prevalent and severe for many patients, particularly in those with advanced disease before they die. The effectiveness of treatment in routine practice appears to have changed little in the last 30 years since publication of the WHO approach.Qualitative studies in patients with advanced cancer suggest that key priorities in pain management strategies should be to help patients achieve a balance between pain and adverse effects of analgesia in order to optimise physical function, and support for selfmanagement.Interventions targeted at physiological, behavioural and health-system mechanisms can improve pain outcomes for patients. Strong opioids have medium to strong effect sizes while most other drug and non-drug interventions have small to medium effect sizes at best. The limitations of current analgesic interventions should encourage greater use of interventions that target patient and healthcare professional behaviour. A framework is proposed for interventions in cancer pain management that target mechanisms and outcomes that are important to patients. This framework might help to broaden management strategies and encourage evidence-based but underused interventions.3

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“…23 Our own research has also shown that patients and their carers face daily dilemmas on the best way to balance pain relief with the adverse effects of analgesia and the consequent impact of both on daily activities. 24,25 Attitudes and knowledge of health-care professionals (HCPs) towards opioids is likely to influence the quality of information provided to patients 26 and the increasing complexity of opioid choices in end-of-life care may further reduce the confidence of non-specialist practitioners. 27 However, addressing the concerns of patients leads to improvements in pain control, 28 and this process relies on specific contexts that support behavioural change in patients, carers and professionals.…”

Section: Background Rationalementioning

confidence: 99%

Self-management toolkit and delivery strategy for end-of-life pain: the mixed-methods feasibility study

Bennett

Mulvey

Campling

et al. 2017

Health Technol Assess

Self Cite

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BackgroundPain affects most people approaching the end of life and can be severe for some. Opioid analgesia is effective, but evidence is needed about how best to support patients in managing these medicines.ObjectivesTo develop a self-management support toolkit (SMST) and delivery strategy and to test the feasibility of evaluating this intervention in a future definitive trial.DesignPhase I – evidence synthesis and qualitative interviews with patients and carers. Phase II – qualitative semistructured focus groups and interviews with patients, carers and specialist palliative care health professionals. Phase III – multicentre mixed-methods single-arm pre–post observational feasibility study.ParticipantsPhase I – six patients and carers. Phase II – 15 patients, four carers and 19 professionals. Phase III – 19 patients recruited to intervention that experienced pain, living at home and were treated with strong opioid analgesia. Process evaluation interviews with 13 patients, seven carers and 11 study nurses.InterventionSelf-Management of Analgesia and Related Treatments at the end of life (SMART) intervention comprising a SMST and a four-step educational delivery approach by clinical nurse specialists in palliative care over 6 weeks.Main outcome measuresRecruitment rate, treatment fidelity, treatment acceptability, patient-reported outcomes (such as scores on the Brief Pain Inventory, Self-Efficacy for Managing Chronic Disease Scale, Edmonton Symptom Assessment Scale, EuroQol-5 Dimensions, Satisfaction with Information about Medicines Scale, and feasibility of collecting data on health-care resource use for economic evaluation).ResultsPhase I – key themes on supported self-management were identified from evidence synthesis and qualitative interviews. Phase II – the SMST was developed and refined. The delivery approach was nested within a nurse–patient consultation. Phase III – intervention was delivered to 17 (89%) patients, follow-up data at 6 weeks were available on 15 patients. Overall, the intervention was viewed as acceptable and valued. Descriptive analysis of patient-reported outcomes suggested that interference from pain and self-efficacy were likely to be candidates for primary outcomes in a future trial. No adverse events related to the intervention were reported. The health economic analysis suggested that SMART could be cost-effective. We identified key limitations and considerations for a future trial: improve recruitment through widening eligibility criteria, refine the SMST resources content, enhance fidelity of intervention delivery, secure research nurse support at recruiting sites, refine trial procedures (including withdrawal process and data collection frequency), and consider a cluster randomised design with nurse as cluster unit.Limitations(1) The recruitment rate was lower than anticipated. (2) The content of the intervention was focused on strong opioids only. (3) The fidelity of intervention delivery was limited by the need for ongoing training and support. (4) Recruitment sites where clinical research nurse support was not secured had lower recruitment rates. (5) The process for recording withdrawal was not sufficiently detailed. (6) The number of follow-up visits was considered burdensome for some participants. (7) The feasibility trial did not have a control arm or assess randomisation processes.ConclusionsA future randomised controlled trial is feasible and acceptable.Study and trial registrationThis study is registered as PROSPERO CRD42014013572; Current Controlled Trials ISRCTN35327119; and National Institute for Health Research (NIHR) Portfolio registration 162114.FundingThe NIHR Health Technology Assessment programme.

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Patient and caregiver perspectives on managing pain in advanced cancer: A qualitative longitudinal study

Abstract: Background: Despite advances in treatment of pain in advanced cancer, it remains a major

Cited by 66 publications

References 31 publications

Symptom experiences in patients with advanced pancreatic cancer as reported during healthcare encounters

Symptom experiences in patients with advanced pancreatic cancer as reported during healthcare encounters

Mechanism-based cancer-pain therapy

Self-management toolkit and delivery strategy for end-of-life pain: the mixed-methods feasibility study

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