<scp>DEEP</scp> Study: does <scp>EQ</scp>‐5D‐5L measure the impacts of persistent oro‐facial pain?

Durham, Justin; Steele, Julie R.; Breckons, Matthew; Story, W.; Vale, Luke

doi:10.1111/joor.12296

Cited by 15 publications

(18 citation statements)

References 43 publications

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“…Furthermore, the longer the pain remains unmanaged, the greater the potential for significant impacts on patients’ lives. This is mirrored in the quantitative data from the DEEP study, with significant impacts on patients’ quality of life at a level similar to those caused by other chronic illnesses, such as arthritis (Durham et al 2015).…”

Section: Discussionmentioning

confidence: 86%

Care Pathways in Persistent Orofacial Pain

Breckons

Bissett

Exley

et al. 2016

JDR Clinical & Translational Research

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Persistent orofacial pain is relatively common and known to have an adverse effect on quality of life. Previous studies suggest that the current care pathway may be problematic, but it is not well understood which health services patients access and what their experience is. The aim of this study was to explore care pathways and their impact from the perspective of patients. Qualitative interviews were conducted with a maximum variation sample of patients recruited from primary (community based) and secondary (specialist hospital based) care in the United Kingdom. Questions focused on the stages in their pathway and the impact of the care that they had received. Interviews were digitally recorded and transcribed verbatim, and analysis followed principles of the constant comparative method. NVivo 10 was used to help organize and analyze data. Twenty-two patients were interviewed at baseline, and 18 took part in a second interview at 12 mo. Three main themes emerged from the data: the "fluidity of the care pathway," in which patients described moving among health care providers in attempts to have their pain diagnosed and managed, occurring alongside a "failure to progress," where despite multiple appointments, patients described frustration at delays in obtaining a diagnosis and effective treatment for their pain. Throughout their care pathways, patients described the "effects of unmanaged pain," where the longer the pain went unmanaged, the greater its potential to negatively affect their lives. Findings of this study suggest that the current care pathway is inefficient and fails to meet patient needs. Future work needs to focus on working with stakeholder groups to redesign patient-centered care pathways. Knowledge Transfer Statement: Data from qualitative interviews conducted with patients with persistent orofacial pain suggest significant problems with the existing care pathway, consisting of delays to diagnosis, treatment, and referral. Patients describing their struggle to progress through the current care pathway highlighted the difficulties occurring while living with orofacial pain. This study suggests a need for a revised care pathway, which better meets the needs of people with persistent orofacial pain.

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Section: Discussionmentioning

confidence: 86%

Care Pathways in Persistent Orofacial Pain

Breckons

Bissett

Exley

et al. 2016

JDR Clinical & Translational Research

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“… 30 In patients with persistent oro-facial pain, the EQ-5D-5L has been demonstrated to have sufficient convergent validity. 31 An additional advantage is that the data can be used in cost-utility analyses. 32 The IPA has been developed in the Netherlands for use in patients with various chronic disorders, among others musculoskeletal disease and nervous system disease.…”

Section: Discussionmentioning

confidence: 99%

Improved health-related quality of life, participation, and autonomy in patients with treatment-resistant chronic pain after an intensive social cognitive intervention with the participation of support partners

Jongen¹,

Ruimschotel²,

Museler-Kreijns³

et al. 2017

JPR

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Despite the availability of various specific treatments, most patients with chronic pain (CP) consider their pain problem as undertreated. Recently, multiple sclerosis (MS) patients who were given an intensive 3-day social cognitive treatment with the participation of support partners experienced lasting improvements in health-related quality of life (HRQoL) and self-efficacy. In this study, a similar intervention was given to treatment-resistant CP patients with stressors, relational problems with support partner, and distress, anxiety or depression. Before and 1, 3, and 6 months after the intervention, patients completed the Euro-Qol 5 Dimensions 5 Levels (EQ-5D-5L) and Impact on Participation and Autonomy (IPA) questionnaires (primary outcomes), and the Survey Of Pain Attitudes (SOPA), the Four-Dimensional Symptom Questionnaire (4DSQ) (distress, depression, anxiety, and somatization), and Visual Analog Scale for pain intensity, whereas the support partners completed the Caregiver Strain Index (CSI) questionnaire. Differences between baseline and post-treatment were tested via paired t-tests (significance level 0.05). Of the 39 patients who were included, 34 (87.2%) completed the 3-day treatment. At 1, 3, and 6 months, improvements were seen in EQ-5D-5L-Index (+40.6%; +22.4%; +31.7%), Health Today (+61.8%; +36.3%; +46.8%), Control attitude (+45.8%; not significant [NS]; +55.0%) and decreases in IPA-Problems (−14.8%; NS; −20.4%), Harm attitude (−18.9%; −15.0%; −17.7%), Distress (−17.7%; −31.8%; −37.1%), and Depression (−37.4%; −31.4%; −35.7%) scores. The CSI score had decreased by −29.0%, −21.4%, and −25.9%, respectively. In conclusion, after an intensive 3-day social cognitive intervention, treatment-resistant CP patients experienced substantial and lasting improvements in HRQoL and in problematic limitations to participation and autonomy, in association with improvements in pain attitudes, depression, and distress. To assess whether this innovative approach may be an effective treatment for this subgroup of CP patients, future randomized controlled studies are needed.

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“…EQ-5D is a widely used, standardised instrument for measuring health status as it relates to overall quality of life and is available in the languages of all countries covered by the study. It incorporates a question about pain and has been shown in other studies to be responsive in its measurement [25][26][27] . EQ-5D's 'Usual activities' subscale enabled the collection of data on participants' ability to carry out their dayto-day activities.…”

Section: Methodsmentioning

confidence: 99%

A multi-country snapshot study of pain in people with haemophilia

Mulders

Thykjaer²,

Khair³

2020

The Journal of Haemophilia Practice

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IntroductionPeople with haemophilia (PwH) experience recurrent bleeds in weight-bearing joints. Optimal management for people with severe haemophilia involves prophylaxis with factor VIII or IX, which helps to reduce the risk of bleeds and joint damage. However, this is expensive and frequently not an option in economically developing countries, where on-demand treatment is more commonly used as bleeding occurs. PwH with moderate and mild haemophilia are also treated on demand. Pain from bleeds and arthropathy is common in PwH; it is recognised as a burden that impairs quality of life and can be challenging to manage.AimsThis study aims to establish greater understanding of the experience of pain in PwH in different countries, the factors that influence this, and how pain is currently managed.MethodsPwH attending haemophilia treatment centres (HTCs) completed an anonymous questionnaire about their experience of pain and pain-relief within the previous 28 days (up to 10 PwH per participating HTC).Results209 PwH from 20 HTCs in 11 countries participated in the study. The median age was 36 (range 8–84); 181 (86.6%) had haemophilia A, 25 (12.0%) haemophilia B, and three (1.4%) did not know; 148 (70.8%) had severe haemophilia, 28 (13.4%) moderate, and 31 (14.8%) mild. Twenty-eight (13.4%) had an inhibitor. The majority (n=121; 57.9%) were on prophylaxis; 61 (29.2%) were treated on demand; 20 (9.6%) used a combination; 7 (3.3%) did not know. 154 PwH (73.9%) experienced a total of 1,945 days of pain with severity on a visual analogue scale reported as 4.5. The most commonly reported sites of pain were joints and muscles. There was no significant difference in pain incidence between countries. Children aged less than 16 years reported the lowest amount of pain, with reported pain increasing with age in older respondents. Simple analgesia such as paracetamol was used but participants reported that it did not relieve pain. Alternative pain-relief strategies including rest, physiotherapy, walking aids, alcohol or marijuana were also used with varying effect.ConclusionsPain is common among PwH and increases with age. Age and developmentally appropriate pain assessment should be a part of routine haemophilia care.

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DEEP Study: does EQ‐5D‐5L measure the impacts of persistent oro‐facial pain?

Cited by 15 publications

References 43 publications

Care Pathways in Persistent Orofacial Pain

Care Pathways in Persistent Orofacial Pain

Improved health-related quality of life, participation, and autonomy in patients with treatment-resistant chronic pain after an intensive social cognitive intervention with the participation of support partners

A multi-country snapshot study of pain in people with haemophilia

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