Understanding the lived experience of chronic pain: A systematic review and synthesis of qualitative evidence syntheses.

Background: Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom. Methods: Four bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives who co-created twenty survey statements. The survey was developed for testing the QES themes for validity in people living with pain. Results: The research team identified and screened 1323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to myself; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a 2-week period in November 2021, and was completed by 1219 people, largely confirming the above themes. Conclusion/Implications: This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool.

Diet and Chronic Non-Cancer Pain: The State of the Art and Future Directions.

Nutrition plays an important role in pain management. Healthy eating patterns are associated with reduced systemic inflammation, as well as lower risk and severity of chronic non-cancer pain and associated comorbidities. The role of nutrition in chronic non-cancer pain management is an emerging field with increasing interest from clinicians and patients. Evidence from a number of recent systematic reviews shows that optimising diet quality and incorporating foods containing anti-inflammatory nutrients such as fruits, vegetables, long chain and monounsaturated fats, antioxidants, and fibre leads to reduction in pain severity and interference. This review describes the current state of the art and highlights why nutrition is critical within a person-centred approach to pain management. Recommendations are made to guide clinicians and highlight areas for future research.

Heart failure-the experience of living with end-stage heart failure and accessing care across settings.

BACKGROUND: Heart failure is a complex clinical syndrome affecting an increasing number of the ageing population. Patients and carers require increasing input from specialist palliative care services to both manage symptoms and access support in the last year of life. An integrated clinical service between the local cardiology team at Princess Royal University Hospital and the palliative care team at St. Christopher's Hospice was piloted for patients with end-stage heart failure in Bromley in Kent, UK. This study explored views of patients and carers who participated in the integrated pilot service. METHODS: A qualitative study was conducted in which a convenience sample of patients and carers were invited to participate in focus groups: two bereaved carer groups (n=2, n=2); one patient group (n=4), held between 14th December 2018 and 18th January 2019. Participants were asked to describe their experiences of care received facilitated by a topic guide. Interviews were recorded, transcribed and coded using thematic analysis to identify common themes. RESULTS: Four patients (2:2 M:F) aged between 70 to 87 years and four female carers whom had cared for patients aged between 70 to 96 years who were since deceased, participated in this study. Overall, the service was positively received, and responses were mapped into four key areas; being diagnosed and living with heart failure, referral to palliative care, key helpful components of the care received and finally, unhelpful components of the new service in terms of care. Common themes emerged including understanding of heart failure and its trajectory, communication around palliative care, having a 'broker' for the system, recognition of carer's needs, service responsiveness, and feeling 'in control'. CONCLUSIONS: This qualitative study highlighted important considerations when developing an integrated heart failure and palliative care service. Education about heart failure for patients and carers, but also the integrated multidisciplinary team is crucial to improving detection of deterioration and facilitating communication around Advance Care Planning. The value of the 'expert-carer' should also be promoted and supported in chronic conditions. We recommend a focus on development of integrated services that enable joined-up care or single point of contact for patients and carers.

The Effect of a Pilot Dietary Intervention on Pain Outcomes in Patients Attending a Tertiary Pain Service.

The aim of this study was to examine the effect of a six-week 2 × 2 design on pain scores, quality of life, and dietary intake in patients attending an Australian tertiary pain clinic. The two intervention components were (1) personalized dietary consultations or waitlist control, and (2) active or placebo dietary supplement (fruit juice). Sixty participants were randomized into one of four groups at baseline (68% female, mean age 49 ± 15 years) with 42 completing the study (70% retention). All groups had statistically significant improvements in three of five pain outcomes. The personalized dietary consultation groups had clinically important improvements in three of five pain outcomes compared to the waitlist control groups. All groups had a statistically significant improvement in six of eight quality-of-life categories post intervention. All groups increased percentage energy from nutrient-dense foods (+5.2 ± 1.4%, p < 0.001) with a significant group-by-time effect for percentage energy from total fat (p = 0.024), with the personalized dietary consultations plus placebo fruit juice reporting the largest reduction (-5.7 ± 2.3%). This study indicates that dietitian-delivered dietary intervention can improve pain scores, quality of life, and dietary intake of people experiencing chronic pain. Future research should evaluate efficacy in a full-powered randomized control trial.

Population Characteristics in a Tertiary Pain Service Cohort Experiencing Chronic Non-Cancer Pain: Weight Status, Comorbidities, and Patient Goals.

We describe the characteristics of patients attending an Australian tertiary multidisciplinary pain service and identify areas for nutrition interventions. This cross-sectional study targets patients experiencing chronic pain who attended the service between June-December 2014. Self-reported data was captured from: (1) an Electronic Persistent Pain Outcomes Collaboration (ePPOC) referral questionnaire, incorporating demographics, pain status, and mental health; (2) a Pain Assessment and Recovery Plan (PARP), which documents patients' perceived problems associated with pain and personal treatment goals. The ePPOC referral questionnaire was completed by 166 patients and the PARP by 153. The mean (SD) patient age was 53 ± 13 years, with almost 60% experiencing pain for >5 years. Forty-five percent of patients were classified as obese (BMI ≥ 30 kg/m², mean (SD) BMI was 31 ± 7 kg/m²), with a mean waist circumference of 104 ± 19.4 cm (SD). The most frequent patient nominated treatment goals related to physical activity (39%), followed by nutritional goals (23%). Traditionally, pain management programs have included physical, psychosocial, and medical, but not nutritional, interventions. By contrast, patients identified and reported important nutrition-related treatment goals. There is a need to test nutrition treatment pathways, including an evaluation of dietary intake and nutrition support. This will help to optimize dietary behaviors and establish nutrition as an important component of multidisciplinary chronic pain management.

Using social media to challenge unwarranted clinical variation in the treatment of chronic noncancer pain: the "Brainman" story.

There is a substantial clinical variation in the contemporary treatment of chronic noncancer pain reflecting different explanatory models and treatment emphasis. Hunter Integrated Pain Service and collaborators developed three key messaging videos outlining the foundations of chronic pain treatment, thus challenging unwarranted clinical variation and calling for greater therapeutic consistency. The videos were released on YouTube as a low-cost public health intervention. Each video used an evidenced informed script appropriate for low literacy and a cartoonist to provide matching images. The whole-person approach emphasized the role of the nervous system and active self-management approaches over passively received medical treatments. The first video was launched on YouTube in August 2011 and made freely available through a Creative Commons license. Multisource feedback led to refinement of key messages using a broader advisory group. Two further videos were launched on a dedicated YouTube channel in October 2014 and circulated through varied professional and consumer networks. All videos were widely viewed on YouTube, utilized by diverse health care organizations, and independently translated into multiple languages. They were embedded in multiple health-related websites. The first video "Understanding pain in less than 5 minutes" is known to have been translated into 15 languages by other health care organizations. The subsequent two videos (Brainman stops his opioids, and Brainman chooses) were translated into German and subtitled in French and Japanese. When the organization hosting the first video ceased operation in 2015 due to changes in primary health care funding, the video had received >700,000 views. Each of the three videos continues to receive ~1,500 views per month on YouTube. Release of evidence-informed key messages via YouTube is a simple method of challenging clinical variation and providing education about chronic pain across the health care system and community.

Ceasing intrathecal therapy in chronic non-cancer pain: an invitation to shift from biomedical focus to active management.

OBJECTIVE: To report long term experience (1997-2009) of intrathecal (IT) therapy for chronic non-cancer pain in the context of our team's increasing emphasis on active management. DESIGN: Descriptive case series. SETTING: Australian tertiary multidisciplinary pain center, Hunter Integrated Pain Service (HIPS). INTERVENTION: This case series reports the changing use of IT implanted drug delivery systems (IDDSs) for chronic non-cancer pain over 13 years. Initially IT therapy was used selectively following multidisciplinary assessment and double blind IT trial. Typical therapy combined opioid with clonidine. Multidimensional management was offered. Treatment strategy changed in 2003 due to HIPS experience of limited therapeutic gains and equivocal support for IT therapy in the literature. Subsequently IT therapy was no longer initiated for non-cancer pain and those on established regimes were encouraged to shift to oral/transdermal opioids with greater emphasis on active management. Patient education and consultation were key elements. Where IT cessation was elective gradual dose reduction commenced as an outpatient. In elective and urgent cases ketamine infusion and oral clonidine were used during hospital admissions to cover the switch to oral/transdermal opioids. Over the study period transition occurred to a broader management framework in which IT therapy for chronic non-cancer pain was no longer supported by HIPS. RESULTS: 25 patients were managed using IDDSs; 8 implanted by HIPS and 17 by other teams. Dose escalation and adverse effects were common. 24 of 25 patients ceased IT therapy; 7 (29%) with urgent IDDS related complications, 16 (67%) electively and 1 due to an unrelated death. The remaining patient returned to her original team to continue IT therapy. One post-explantation patient transferred to another team to recommence IT therapy. The remainder were successfully maintained on oral/transdermal opioids combined with active management.

A whole-person model of care for persistent pain: from conceptual framework to practical application.

SETTING: The study was set in an Australian tertiary public hospital multidisciplinary pain center. OBJECTIVES: The objectives of the study were to describe the conceptual shift undertaken by a multidisciplinary team in moving from a traditional approach to an emerging paradigm in pain medicine and to describe the practical application of a whole-person model of care and report outcomes over the period 2003-2010. DESIGN: The study design was descriptive, including a brief review of current evidence base, consideration of models of service delivery, and analysis of the impact of applying a new, whole-person model of care for persistent pain. INTERVENTION: Since 2004, a series of changes led to significant health system redesign. The process involved development of a broader, whole-person understanding of the individual with pain and a more integrated approach to service delivery across the spectrum from community to tertiary care. RESULTS: Broad trends in the period 2003-2010 included a modest reduction in referral rate, marked reduction in waiting times, more efficient staff utilization, inversion of the ratio of new assessments to review appointments, increased telephone contact with primary care, increased use of personalized pain management plans, reduced procedural interventions and increased attendance at and clinically significant gains from shorter and more flexible group programs. CONCLUSIONS: Changes to conceptual framework inevitably influence the practicalities of service delivery. The application of a whole-person model for persistent pain brought improved engagement with the individual in pain and more efficient delivery of care at a systems level.

Provision of palliative care for chronic heart failure inpatients: how much do we need?

BACKGROUND: Clinical guidance recommends early CHF palliative care intervention, but the magnitude of need is unknown and evidence-based referral criteria absent.This study aimed to: 1) Measure point prevalence of inpatients appropriate for palliative care. 2) Identify patient characteristics associated with palliative care appropriateness. 3) Propose evidence-based clinical referral criteria. METHODS: Census: all adult medical inpatient files in a UK tertiary teaching hospital were reviewed, identifying patients with CHF as a reason for current admission, using NYHA stage 3/4 classification, cross referenced with existing ECHO data. Each CHF patient was classified according to appropriateness for palliative care against a definition of unresolved pain and/or symptoms and/or psychosocial problems 7 days post admission. RESULTS: Three hundred and sixty-five patient files were reviewed, and 28 clinically identified as having CHF. Of these, 11 had confirmed unpreserved ejection fraction,16 of the 28 patients were appropriate for palliative care. Of the total inpatient population reviewed, 10 (2.7%) had both confirmed ejection fraction 45% also require palliative care. Our conservative criteria suggest a point prevalence of 2.7% of patients having both ejection fraction

Meeting the communication and information needs of chronic heart failure patients.

There is a lack of evidence on how best to meet policy guidance in fulfilling the information needs of patients with chronic heart failure (CHF) and their families. We aimed to generate guidance for appropriate information provision to CHF patients and their families through a cross-sectional qualitative methodology with constant comparison of emergent themes. Participants were 20 CHF patients (New York Heart Association Functional Classification III, III-IV, and IV); 11 family carers; six palliative care staff; and six cardiology staff. Patients and carers severely lacked understanding of CHF and its symptoms. None had discussed disease progression or advanced care planning with staff. Although patients expected honest discussion of disease implications, data from clinicians described an unwillingness to disclose poor prognosis. We identified four types of barriers to the discussion of disease progression: disease-specific; patient-specific; specialism-specific; and staff time and resources. This is the first study to integrate cardiology, palliative care, and patient and family views to develop feasible recommendations on meeting information needs. Three recommendations for hospital-based clinical practice were generated from the data: (1) improved methods of providing information; (2) introduction of mutual education and joint working; and (3) development of care pathways and referral criteria.

Modelling services to meet the palliative care needs of chronic heart failure patients and their families: current practice in the UK.

OBJECTIVE: To describe current provision of specialist palliative care for chronic heart failure (CHF) patients, and explore challenges, referral criteria and recommendations to inform service development. METHOD: Semi-structured qualitative telephone survey of key professionals involved in CHF palliative care in the UK. RESULTS: Twenty telephone interviews were conducted with staff from 17 services comprising three main types: hospital-based (n = 7), community-based (n = 6) and hospice-based (n = 4). The main recommendations made were to establish mechanisms for joint working between palliative care and cardiology; to ensure that stakeholders are involved from the outset of service planning; and to involve community heart failure nurses in service provision. Referral guidelines were collected from four services, covering diagnostic, symptomatological, psychosocial and team-related criteria. CONCLUSIONS: Information regarding existing services' challenges, recommendations and referral systems is essential when designing a new service, maximising feasibility and acceptability. This study design is of particular value when descriptions and evaluations of service models are lacking in the literature. The survey gives much-needed depth and detail to the types of services currently providing palliative care to CHF patients across the UK.

A randomized comparison of the Cryolife O'Brien and Toronto stentless replacement aortic valves.

OBJECTIVE: A composite stentless valve might be less obstructive than a preparation incorporating the porcine right coronary muscle bar. The aim of this study was to compare early hemodynamic function in a prospective series of 78 patients randomized to receive either a Toronto or Cryolife O'Brien stentless valve. METHODS: Echocardiography was performed early after surgery, between 3 and 6 months, and at 1 year after surgery. RESULTS: The groups were matched demographically. The Cryolife O'Brien valve was significantly less obstructive in terms of effective orifice area (1.81 vs 1.30 cm2; P < .0001), mean pressure difference (7.1 vs 11.7 mm Hg; P < .0001), and peak velocity (1.7 vs 2.2 m/s) assessed at 1 year (P = .001). Bypass time was 91 (SD 22) minutes for the Cryolife O'Brien compared with 125 (SD 22) minutes (P < .0001) for the Toronto. There was a higher incidence of paraprosthetic regurgitation in the Cryolife O'Brien valve (16.7% vs 3.2%). Mortality and clinical events were similar. CONCLUSION: The composite valve was less obstructive than the porcine valve, suggesting that stentless valves cannot be considered as a homogeneous class.

Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts it won't".

BACKGROUND: Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for patients approaching the end of life. AIMS: (1) To formulate guidance and recommendations for improving end-of-life care in CHF; (2) to generate data on patients' and carers' preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end-of-life issues. DESIGN: Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart Association functional classification III-IV), 11 family carers, 6 palliative care clinicians and 6 cardiology clinicians. SETTING: A tertiary hospital in London, UK. RESULTS: Patients and families reported a wide range of end-of-life care preferences. None had discussed these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients. Disease- and specialism-specific barriers to improving end-of-life care were identified. CONCLUSIONS: The novel, integrated data presented here provide three recommendations for improving care in line with policy directives: sensitive provision of information and discussion of end-of-life issues with patients and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care referral criteria and care pathways for patients with CHF.

The subcoronary Toronto stentless versus supra-annular Perimount stented replacement aortic valve: early clinical and hemodynamic results of a randomized comparison in 160 patients.

BACKGROUND: A stentless valve is expected to be hemodynamically superior to a stented valve. The aim of this study was to compare early postoperative hemodynamic function and clinical events in a randomized, prospective series of 160 stentless and stented biological replacement aortic valves. METHODS: We randomized 160 consecutive patients on 1 surgeon's list to receive either a Toronto stentless porcine valve (St Jude Medical, Inc, St Paul, Minn) or a Perimount stented bovine pericardial valve (Edwards Lifesciences, Irvine, Calif). Echocardiography was performed at discharge, between 3 and 6 months, and at 1 year after surgery. Statistical analysis was performed by both intention to treat and actual valves implanted. RESULTS: The mean labeled size of both designs of valve was 24.7. There were no statistically significant differences in results at any time interval or whether analysis was performed by actual valves implanted or intention to treat. At 3 to 6 months for the Toronto versus the Perimount valve, the effective orifice area was 1.58 versus 1.66 cm2, the mean pressure difference was 7.54 versus 7.42 mm Hg, and the peak velocity was 2.07 versus 2.0.1 m/s. There was no difference in mortality, regression of left ventricular hypertrophy, or complications other than paraprosthetic regurgitation at 12 months or on follow-up for a proportion of the sample to 8 years. The incidence of regurgitation through the valves was similar for Toronto (10%) and Perimount (13.8%) at 1 year, but mild paraprosthetic regurgitation was found in 5 patients with the Perimount valve and none with Toronto valves. CONCLUSIONS: There were no significant differences in hemodynamic function or clinical events between the stented and stentless biological valves chosen for comparison in the early postoperative period or in preliminary follow-up to 5 years.

Hemodynamic performance on exercise: comparison of a stentless and stented biological aortic valve replacement.

BACKGROUND AND AIM OF THE STUDY: Although stentless valves are expected to be hemodynamically superior to stented valves, the results of comparative trials have been inconsistent. The study aim was to compare hemodynamic function at rest and on exercise in 50 stentless and stented biological replacement aortic valves METHODS: Twenty-one patients with a Toronto stentless porcine valve and 29 with a Perimount stented bovine pericardial valve were exercised using a bicycle ergometer. Echocardiography was performed before, and during exercise testing. RESULTS: Patients with either valve type were exercised to a similar degree. Transaortic resistance was slightly lower in the Perimount compared with the Toronto at rest (p = 0.03) and at peak exercise (p = 0.04), and flow was higher in the Perimount at rest (p = 0.007), but not at peak exercise. There were no significant differences between the valve types in peak velocity, mean pressure difference or effective orifice area either at rest or on peak exercise. CONCLUSION: There were no clinically significant differences in hemodynamic function between the stented and stentless biological valves chosen for comparison either at rest or during bicycle exercise.