Understanding the Needs and Priorities of People Living with Persistent Pain and Long-Term Musculoskeletal Conditions during the COVID-19 Pandemic—A Public Involvement Project
Abstract
:1. Introduction
2. Background
3. Methods
- People with fibromyalgia via community and voluntary sector groupsFibromyalgia is a long-term condition, where pain is felt all over the body and is thought to be neural in origin. Fibromyalgia is estimated to affect 1.8–2.9 million people in the U.K. [15]. The condition can be diagnosed after people experience severe pain for longer than 3 months, associated with increased fatigue, poor sleep and cognitive decline.
- Care home residentsOlder adults living in care homes may have entered care with existing pain, but this can be exacerbated by sedentary lifestyles or by deterioration and terminal illness. Enhancing Health in Care Homes [16] sought to improve holistic care for very old adults living in care homes, but the lockdown reduced access to pharmacological assessment and increased isolation from family and friends.
- Elective orthopaedic patientsThe number of patients who are waiting for elective surgery has increased dramatically, particularly in orthopaedics. In England, approximately 600,000 people are currently waiting to begin treatment for trauma/orthopaedic interventions [17]. National policy recommends increasing the offer around self-management services [18], but organisations such as National Voice have highlighted other priorities and recommendations from patients currently awaiting treatment, including a desire to be listened to, supported involvement in decision making, clear and accessible information and regular contact with healthcare professionals [19].
Synthesis by Expert Consensus
4. Results
4.1. Understanding the Pain Experience for People with Fibromyalgia
4.1.1. Living with Pain
4.1.2. Communicating Pain
4.1.3. Diagnosis
4.1.4. Lack of Control
4.1.5. Managing Activity
4.1.6. Access to Services
4.1.7. Primary Care
4.1.8. Impact of COVID-19
4.1.9. Differences in Experiences by Demographic
4.2. Understanding Pain Experienced by Elective Orthopaedic Patients
4.2.1. Beliefs about Elective Surgery and Pain
4.2.2. Impact of Pain
4.2.3. Communication with Healthcare Professionals
4.2.4. Self-Management of Pain
4.2.5. Differences in Experiences by Demographic
4.3. Understanding Pain of Older Residents in Care Homes
4.3.1. Assessing Pain Experience
4.3.2. Communicating Pain Experience
4.3.3. Lack of Agency and Access to Services
4.3.4. Complexity of Pain Medication for Older Residents
4.3.5. Lack of Pain Care Planning and Documentation
4.3.6. Differences by Demographic
4.3.7. Effects of COVID-19
4.4. Findings from the Synthesis of Pain Experiences
4.4.1. Pain Experience
- Pain experience is difficult to communicate to professionals and others.
- Pain is exhausting, frustrating and socially limiting.
- Pain results in exclusion from usual daily activities, e.g., regular employment.
- Pain makes you resigned to being/feeling unwell and may be constant and enduring.
- Pain is poorly understood by some health professionals, and this affects trust.
4.4.2. Service Statements
- Everyone with pain should have an individually tailored care plan that includes supported self-management and pain medications.
- People with pain most want to feel heard and validated by health professionals.
- Pain is different in intensity for everyone, so it needs to be properly and continuously assessed.
- It is necessary to consider lots of different approaches that alleviate or make living with pain easier.
- Pain should include identifying and addressing emotional needs, triggers and sources of pain.
4.4.3. Research Statements
- More research is needed to inform professionals’ prioritisation of effective pain management strategies that tailor the care plan to the individual.
- Professionals and agencies need guidance on age-appropriate and culturally appropriate opportunities for people to learn to manage pain.
- Healthcare professionals need evidence-based knowledge and training about the perception of pain medicine.
- Best practices in pain assessment tools and implementation of continuous assessment are required.
- Professionals and agencies need guidance on how to communicate about pain.
5. Discussion
- Accurate information for whether to wait for NHS services or pay for private services.
- Providing status updates to ease anxiety, especially in patients with low social support. Gillis et al. [106] reported that patients hold off making large financial commitments or bookings for things such as holidays or family visits until they have their surgery.
- Letters are out of date and more up-to-date two-way communication is needed.
- Information on what is being done to manage waiting lists and reduce their waiting times.
6. Limitations
7. Conclusions and Recommendations
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
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Fowler Davis, S.; Humphreys, H.; Maden-Wilkinson, T.; Withers, S.; Lowe, A.; Copeland, R.J. Understanding the Needs and Priorities of People Living with Persistent Pain and Long-Term Musculoskeletal Conditions during the COVID-19 Pandemic—A Public Involvement Project. Healthcare 2022, 10, 1130. https://doi.org/10.3390/healthcare10061130
Fowler Davis S, Humphreys H, Maden-Wilkinson T, Withers S, Lowe A, Copeland RJ. Understanding the Needs and Priorities of People Living with Persistent Pain and Long-Term Musculoskeletal Conditions during the COVID-19 Pandemic—A Public Involvement Project. Healthcare. 2022; 10(6):1130. https://doi.org/10.3390/healthcare10061130
Chicago/Turabian StyleFowler Davis, Sally, Helen Humphreys, Tom Maden-Wilkinson, Sarah Withers, Anna Lowe, and Robert J. Copeland. 2022. "Understanding the Needs and Priorities of People Living with Persistent Pain and Long-Term Musculoskeletal Conditions during the COVID-19 Pandemic—A Public Involvement Project" Healthcare 10, no. 6: 1130. https://doi.org/10.3390/healthcare10061130