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
References
- Public Involvement—Health Research Authority (hra.nhs.uk). Available online: https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/ (accessed on 5 May 2022).
- Fowler-Davis, S.; Woodward, C. Bringing lived experience into research; good practices for public involvement in research, Special Edition: Public Engagement and Co-production in Public Health. 2022; in press. [Google Scholar]
- Williams, O.; Robert, G.; Martin, G.P.; Hanna, E.; O’Hara, J. Is co-production just really good PPI? Making sense of patient and public involvement and co-production networks. In Decentring Health and Care Networks; Palgrave Macmillan: Cham, Switzerland, 2020; pp. 213–237. [Google Scholar]
- Brett, J.O.; Staniszewska, S.; Mockford, C.; Herron-Marx, S.; Hughes, J.; Tysall, C.; Suleman, R. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient Patient Cent. Outcomes Res. 2014, 7, 387–395. [Google Scholar] [CrossRef] [PubMed]
- Davis, S.F.; Silvester, A.; Barnett, D.; Farndon, L.; Ismail, M. Hearing the voices of older adult patients: Processes and findings to inform health services research. Res. Involv. Engagem. 2019, 5, 11. [Google Scholar] [CrossRef] [PubMed]
- Medin, D.L.; Lee, C.D. Diversity makes better science. APS Obs. 2012, 25. [Google Scholar]
- Bu, F.; Bone, J.K.; Mitchell, J.J.; Steptoe, A.; Fancourt, D. Longitudinal changes in physical activity during and after the first national lockdown due to the COVID-19 pandemic in England. Sci Rep. 2021, 11, 17723. [Google Scholar] [CrossRef] [PubMed]
- Arthritis, V. Chronic Pain in England: Unseen, Unequal and Unfair. June 2021. Available online: https://trfthealthweeklydigest.wordpress.com/2021/07/01/chronic-pain-in-england-unseen-unequal-unfair/ (accessed on 15 December 2021).
- British Pain Society. The Silent Epidemic-Chronic Pain in the UK. 2016. Available online: https://www.britishpainsociety.org/mediacentre/news/the-silent-epidemic-chronic-pain-in-the-uk/ (accessed on 15 December 2021).
- Carville, S.; Constanti, M.; Kosky, N.; Stannard, C.; Wilkinson, C. Guideline Committee. Chronic pain (primary and secondary) in over 16s: Summary of NICE guidance. BMJ 2021, 373, n895. [Google Scholar] [CrossRef]
- James Lind Alliance Osteoarthritis. Available online: https://www.jla.nihr.ac.uk/priority-setting-partnerships/early-hip-and-knee-osteoarthritis/top-10-priorities.htm (accessed on 15 May 2021).
- Pham, M.T.; Rajić, A.; Greig, J.D.; Sargeant, J.M.; Papadopoulos, A.; McEwen, S.A. A scoping review of scoping reviews: Advancing the approach and enhancing the consistency. Res. Synth. Methods 2014, 5, 371–385. [Google Scholar] [CrossRef]
- Hendriks, C.M.; Lees-Marshment, J. Political leaders and public engagement: The hidden world of informal elite–citizen interaction. Political Stud. 2019, 67, 597–617. [Google Scholar] [CrossRef]
- Voicu, M.C.; Babonea, A.M. Using the snowball method in marketing research on hidden populations. Soc. Probl. 1997, 44. [Google Scholar]
- Versus Arthritis. Available online: https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/ (accessed on 15 December 2021).
- England NHS, Improvement NHS. The Framework for Enhanced Health in Care Homes. England N: NHS England. 2016. Available online: https://wessexahsn.org.uk/img/projects/the-framework-for-enhanced-health-in-care-homes-v2-0.pdf (accessed on 4 May 2022).
- Consultant-led Referral to Treatment Waiting Times Data 2021–2022. NHS England. [cited 5 December 2021]. Available online: https://www.england.nhs.uk/statistics/statistical-work-areas/rtt-waiting-times/rtt-data-2021-22/ (accessed on 15 December 2021).
- Arthritis and Musculoskeletal Alliance. Chronic Pain: Policy Position. November 2021. Available online: http://arma.uk.net/wp-content/uploads/2017/08/Policy-Paper-Prevention_interactive2.pdf (accessed on 4 May 2022).
- National Voices. Improving Our Understanding of the Experience of Waiting for Elective Care. 2020. Available online: https://www.nationalvoices.org.uk/sites/default/files/public/publications/national_voices_desk_research_improving_our_understanding_of_the_experience_of_waiting_for_care_february_2020.pdf (accessed on 1 January 2022).
- Friedman, D.J.; Starfield, B. Models of population health: Their value for US public health practice, policy, and research. Am. J. Public Health 2003, 93, 366–369. [Google Scholar] [CrossRef]
- Wainwright, D.; Boichat, C.; McCracken, L.M. Using the nominal group technique to engage people with chronic pain in health service development. Int. J. Health Plan. Manag. 2013, 29, 52–69. [Google Scholar] [CrossRef] [Green Version]
- Patton, M.Q. Qualitative Evaluation and Research Methods; Sage: Thousand Oaks, CA, USA, 1990. [Google Scholar]
- Kwiatek, R. Treatment of fibromyalgia. Aust Prescr. 2017, 40, 179–183. [Google Scholar] [CrossRef] [PubMed]
- Sluka, K.A.; Clauw, D.J. Neurobiology of fibromyalgia and chronic widespread pain. Neuroscience 2016, 338, 114–129. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Leinders, M.; Doppler, K.; Klein, T.; Deckart, M.; Rittner, H.; Sommer, C.; Üçeyler, N. Increased cutaneous miR-let-7d expression correlates with small nerve fiber pathology in patients with fibromyalgia syndrome. Pain 2016, 157, 2493–2503. [Google Scholar] [CrossRef] [PubMed]
- Light, A.R.; Bateman, L.; Jo, D.; Hughen, R.W.; VanHaitsma, T.A.; White, A.T.; Light, K.C. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J. Intern. Med. 2011, 271, 64–81. [Google Scholar] [CrossRef]
- Bennett, R.M.; Jones, J.; Turk, D.C.; Russell, I.J.; Matallana, L. An internet survey of 2596 people with fibromyalgia. BMC Musculoskelet. Disord. 2007, 8, 27. [Google Scholar]
- Nakamura, M.; Toyama, Y.; Nishiwaki, Y.; Ushida, T. Prevalence and characteristics of chronic musculoskeletal pain in Japan: A second survey of people with or without chronic pain. J. Orthop. Sci. 2014, 19, 339–350. [Google Scholar] [CrossRef] [Green Version]
- Nakamura, I.; Nishioka, K.; Usui, C.; Osada, K.; Ichibayashi, H.; Ishida, M.; Turk, D.C.; Matsumoto, Y.; Nishioka, K. An epidemiologic internet survey of fibromyalgia and chronic pain in Japan. Arthritis Care Res. 2014, 66, 1093–1101. [Google Scholar] [CrossRef]
- Furness, P.J.; Vogt, K.; Ashe, S.; Taylor, S.; Haywood-Small, S.; Lawson, K. What causes fibromyalgia? An online survey of patient perspectives. Health Psychol. Open 2018, 5, 205510291880268. [Google Scholar] [CrossRef] [Green Version]
- Clauw, D.J.; Witter, J. Pain and rheumatology: Thinking outside the joint. Arthritis Care Res. 2009, 60, 321–324. [Google Scholar] [CrossRef]
- Chen, K.-M.; Tseng, W.-S.; Ting, L.-F.; Huang, G.-F. Development and evaluation of a yoga exercise programme for older adults. J. Adv. Nurs. 2007, 57, 432–441. [Google Scholar] [CrossRef]
- Briones-Vozmediano, E.; Öhman, A.; Goicolea, I.; Vives-Cases, C. “The complaining women”: Health professionals’ perceptions on patients with fibromyalgia in Spain. Disabil. Rehabil. 2018, 40, 1679–1685. [Google Scholar] [CrossRef] [PubMed]
- Sanders, T.; Foster, N.E.; Bishop, A.; Ong, B.N. Biopsychosocial care and the physiotherapy encounter: Physiotherapists’ accounts of back pain consultations. BMC Musculoskelet. Disord. 2013, 14, 65. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Wolf, S.L.; Barnhart, H.X.; Kutner, N.G.; McNeely, E.; Coogler, C.; Xu, T. Reducing frailty and falls in older persons: An investigation of Tai Chi and computerized balance training. Atlanta FICSIT Group. Frailty and Injuries: Cooperative Studies of Intervention Techniques. J. Am. Geriatr. Soc. 1996, 44, 489–497. [Google Scholar] [CrossRef] [PubMed]
- Li, F.; Harmer, P.; Fisher, K.J.; McAuley, E. Tai Chi: Improving Functional Balance and Predicting Subsequent Falls in Older Persons. Med. Sci. Sports Exerc. 2004, 36, 2046–2052. [Google Scholar] [CrossRef] [Green Version]
- Ashe, S.C.; Furness, P.J.; Taylor, S.J.; Haywood-Small, S.; Lawson, K. A qualitative exploration of the experiences of living with and being treated for fibromyalgia. Health Psychol. Open 2017, 4, 2055102917724336. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Ryan, S.; Packham, J.C.; TDawes, P.; Jordan, K.P. The impact of a nurse-led chronic musculoskeletal pain clinic on healthcare utilization. Musculoskelet. Care 2012, 10, 196–201. [Google Scholar] [CrossRef]
- Taylor, S.J.; Steer, M.; Ashe, S.C.; Furness, P.J.; Haywood-Small, S.; Lawson, K. Patients’ perspective of the effectiveness and acceptability of pharmacological and non-pharmacological treatments of fibromyalgia. Scand. J. Pain 2019, 19, 167–181. [Google Scholar] [CrossRef] [Green Version]
- Bennett, R.M.; Russell, J.; Cappelleri, J.C.; Bushmakin, A.G.; Zlateva, G.; Sadosky, A. Identification of symptom and functional domains that fibromyalgia patients would like to see improved: A cluster analysis. BMC Musculoskelet. Disord. 2010, 11, 134. [Google Scholar] [CrossRef] [Green Version]
- Lempp, H.K.; Hatch, S.L.; Carville, S.F.; Choy, E.H. Patients‘ experiences of living with and receiving treatment for fibromyalgia syndrome: A qualitative study. BMC Musculoskelet. Disord. 2009, 10, 124. [Google Scholar] [CrossRef] [Green Version]
- van Uden-Kraan, C.F.; Drossaert, C.H.C.; Taal, E.; Shaw, B.R.; Seydel, E.R.; van de Laar, M.A.F.J. Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qual. Health Res. 2008, 18, 405–417. [Google Scholar] [CrossRef]
- Sallinen, M.; Kukkurainen, M.L.; Peltokallio, L.; Mikkelsson, M. “I‘m tired of being tired”—Fatigue as experienced by women with fibromyalgia. Adv. Physiother. 2011, 13, 11–17. [Google Scholar] [CrossRef]
- Bartlett, Y.K.; Coulson, N.S. An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient Educ. Couns. 2011, 83, 113–119. [Google Scholar] [CrossRef] [PubMed]
- Haviland, M.G.; Morton, K.R.; Oda, K.; Fraser, G.E. Traumatic experiences, major life stressors, and self-reporting a physician-given fibromyalgia diagnosis. Psychiatry Res. 2010, 177, 335–341. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Briones-Vozmediano, E.; Vives-Cases, C.; Ronda-Pérez, E.; Gil-González, D. Patients’ and professionals‘ views on managing fibromyalgia. Pain Res. Manag. 2013, 18, 19–24. [Google Scholar] [CrossRef]
- Cisternas, A.F.; Ramachandran, R.; Yaksh, T.L.; Nahama, A. Unintended consequences of COVID-19 safety measures on patients with chronic knee pain forced to defer joint replacement surgery. Pain Rep. 2020, 5, e855. [Google Scholar] [CrossRef]
- Limb, M. Care Quality Commission finds growing inequalities in access to health and social care in England. BMJ 2018, 363, k4300. [Google Scholar] [CrossRef] [PubMed]
- Care Quality Commission. The State of Health Care and Adult Social Care in England 2017/18; The Stationery Office: London, UK, 2018. [Google Scholar]
- Palmer, K.T.; Milne, P.; Poole, J.; Cooper, C.; Coggon, D. Employment characteristics and job loss in patients awaiting surgery on the hip or knee. Occup. Environ. Med. 2005, 62, 54–57. [Google Scholar] [CrossRef] [Green Version]
- Oudhoff, J.P.; Timmermans, D.R.M.; Knol, D.L.; Bijnen, A.B.; Van Der Wal, G. Waiting for elective general surgery: Impact on health related quality of life and psychosocial consequences. BMC Public Health 2007, 7, 164. [Google Scholar] [CrossRef]
- Anema, J.R.; van der Giezen, A.M.; Buijs, P.C.; van Mechelen, W. Ineffective disability management by doctors is an obstacle for return-to-work: A cohort study on low back pain patients sicklisted for 3–4 months. Occup. Environ. Med. 2002, 59, 729–733. [Google Scholar] [CrossRef] [Green Version]
- Ostendorf, M.; Buskens, E.; van Stel, H.; Schrijvers, A.; Marting, L.; Dhert, W.; Verbout, A. Waiting for total hip arthroplasty: Avoidable loss in quality time and preventable deterioration. J. Arthroplast. 2004, 19, 302–309. [Google Scholar] [CrossRef]
- Donell, S.T.; Thaler, M.; Budhiparama, N.C.; Buttaro, M.A.; Chen, A.F.; Diaz-Ledezma, C.; Gomberg, B.; Hirschmann, M.T.; Karachalios, T.; Karpukhin, A.; et al. Preparation for the next COVID-19 wave: The European Hip Society and European Knee Associates recommendations. Knee Surg. Sports Traumatol. Arthrosc. 2020, 28, 2747–2755. [Google Scholar] [CrossRef] [PubMed]
- Kort, N.P.; Barrena, E.G.; Bédard, M.; Donell, S.; Epinette, J.-A.; Gomberg, B.; Hirschmann, M.T.; Indelli, P.; Khosravi, I.; Karachalios, T. Recommendations for resuming elective hip and knee arthroplasty in the setting of the SARS-CoV-2 pandemic: The European Hip Society and European Knee Associates Survey of Members. Knee Surg Sports Traumatol. Arthrosc. 2020, 28, 2723–2729. [Google Scholar] [CrossRef]
- Versus Arthritis. Impossible to Ignore. Available online: https://www.versusarthritis.org/campaign-with-us/impossible-to-ignore/ (accessed on 16 November 2021).
- Casson, A.G.; Carr, T.; Teucher, U.; Mann, J. Waiting for surgery from the patient perspective. Psychol. Res. Behav. Manag. 2009, 2, 107–119. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Jenkins, P. The Early Effect of COVID-19 on Trauma and Elective Orthopaedic Surgery. The Transient Journal of Trauma, Orthopaedics and the Coronavirus. 2020. Available online: https://www.boa.ac.uk/resources/covid-19/the-early-effect-of-covid-19-on-trauma-and-elective-orthopaedic-surgery.html (accessed on 1 January 2022).
- Abdulla, A.; Adams, N.; Bone, M.; Elliott, A.; Gaffin, J.; Jones, D.; Knaggs, R.; Martin, D.; Sampson, L.; Schofield, P. Evidence-based clinical practice guidelines on the management of pain in older people: Executive summary. Br. J. Pain 2013, 7, 152–154. [Google Scholar] [CrossRef] [Green Version]
- Bergh, I.; Steen, G.; Waern, M.; Johansson, B.; Odén, A.; Sjöström, B.; Steen, B. Pain and its relation to cognitive function and depressive symptoms: A Swedish population study of 70-year-old men and women. J. Pain Symptom Manag. 2003, 26, 903–912. [Google Scholar] [CrossRef]
- Elliott, A.M.; Smith, B.H.; Penny, K.I.; Cairns Smith, W.; Alastair Chambers, W. The epidemiology of chronic pain in the community. Lancet 1999, 354, 1248–1252. [Google Scholar] [CrossRef]
- Blyth, F.M.; March, L.M.; Brnabic, A.J.; Jorm, L.R.; Williamson, M.; Cousins, M.J. Chronic pain in Australia: A prevalence study. Pain 2001, 89, 127–134. [Google Scholar] [CrossRef]
- Ferrell, B.A.; Ferrell, B.R.; Rivera, L. Pain in cognitively impaired nursing home patients. J. Pain Symptom Manag. 1995, 10, 591–598. [Google Scholar] [CrossRef]
- Boerlage, A.A.; van Dijk, M.; Stronks, D.L.; de Wit, R.; van der Rijt, C.C.D. Pain prevalence and characteristics in three Dutch residential homes. Eur J Pain. 2008, 12, 910–916. [Google Scholar] [CrossRef]
- Zanocchi, M.; Maero, B.; Nicola, E.; Martinelli, E.; Luppino, A.; Gonella, M.; Gariglio, F.; Fissore, L.; Bardelli, B.; Obialero, R.; et al. Chronic pain in a sample of nursing home residents: Prevalence, characteristics, influence on quality of life (QoL). Arch. Gerontol. Geriatr. 2008, 47, 121–128. [Google Scholar] [CrossRef] [PubMed]
- Weiner, D.; Peterson, B.; Ladd, K.; McConnell, E.; Keefe, F. Pain in nursing home residents: An exploration of prevalence, staff perspectives, and practical aspects of measurement. Clin. J. Pain 1999, 15, 92–101. [Google Scholar] [CrossRef] [PubMed]
- Turpie, L.; Whitelaw, S.; Topping, C. Physical activity promotion in care homes. Work. Older People 2017, 21, 206–214. [Google Scholar] [CrossRef] [Green Version]
- Hurley, M.V.; Wood, J.; Smith, R.; Grant, R.; Jordan, J.; Gage, H.; Anderson, L.W.; Kennedy, B.; Jones, F. The feasibility of increasing physical activity in care home residents: Active Residents in Care Homes (ARCH) programme. Physiotherapy 2019, 107, 50–57. [Google Scholar] [CrossRef] [PubMed]
- Forster, A.; Airlie, J.; Birch, K.; Cicero, R.; Cundill, B.; Ellwood, A.; Godfrey, M.; Graham, L.; Green, J.; Hulme, C.; et al. Research Exploring Physical Activity in Care Homes (REACH): Study protocol for a randomised controlled trial. Trials 2017, 18, 182. [Google Scholar] [CrossRef] [PubMed]
- Stokes, G. 14 CHAPTER Wandering: We Walk, They Wander! In The Essential Dementia Care Handbook: A Good Practice Guide; Taylor & Francis: Oxfordshire, UK, 2017; p. 152. [Google Scholar]
- Ellard, D.R.; Thorogood, M.; Underwood, M.; Seale, C.; Taylor, S.J. Whole home exercise intervention for depression in older care home residents (the OPERA study): A process evaluation. BMC Med. 2014, 12, 1. [Google Scholar] [CrossRef] [Green Version]
- Tam, J.; Lacaille, D.; Liu-Ambrose, T.; Shaw, C.; Xie, H.; Backman, C.L.; Esdaile, J.M.; Miller, K.; Petrella, R.; Li, L.C. Effectiveness of an online self-management tool, OPERAS (an On-demand Program to EmpoweR Active Self-management), for people with rheumatoid arthritis: A research protocol. Trials 2019, 20, 712. [Google Scholar] [CrossRef] [Green Version]
- Husebo, B.S.; Achterberg, W.P.; Lobbezoo, F.; Kunz, M.; Lautenbacher, S.; Kappesser, J.; Tudose, C.; Strand, L.I. Pain in patients with dementia: A review of pain assessment and treatment challenges. Nor. Epidemiologi 2012, 22, 243–251. [Google Scholar] [CrossRef]
- Corbett, A.; Husebo, B.; Malcangio, M.; Staniland, A.; Cohen-Mansfield, J.; Aarsland, D.; Ballard, C. Assessment and treatment of pain in people with dementia. Nat. Rev. Neurol. 2012, 8, 264–274. [Google Scholar] [CrossRef]
- Savvas, S.; Gibson, S. Pain management in residential aged care facilities. Aust. Fam. Physician 2015, 44, 198–203. [Google Scholar]
- Cook, A.J.; Chastain, D.C. The classification of patients with chronic pain: Age and sex differences. Pain Res. Manag. 2001, 6, 142–151. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Yong, H.-H. Can attitudes of stoicism and cautiousness explain observed age-related variation in levels of self-rated pain, mood disturbance and functional interference in chronic pain patients? Eur. J. Pain 2006, 10, 399–407. [Google Scholar] [CrossRef] [PubMed]
- Yong, H.-H.; Bell, R.; Workman, B.; Gibson, S.J. Psychometric properties of the Pain Attitudes Questionnaire (revised) in adult patients with chronic pain. Pain 2003, 104, 673–681. [Google Scholar] [CrossRef]
- Spiers, J. Expressing and responding to pain and stoicism in home-care nurse–patient interactions. Scand. J. Caring Sci. 2006, 20, 293–301. [Google Scholar] [CrossRef] [PubMed]
- Scherder, E.J.; A Sergeant, J.A.; Swaab, D.F. Pain processing in dementia and its relation to neuropathology. Lancet Neurol. 2003, 2, 677–686. [Google Scholar] [CrossRef]
- Achterberg, W.P.; Pieper, M.J.; van Dalen-Kok, A.H.; de Waal, M.W.; Husebo, B.S.; Lautenbacher, S.; Kunz, M.; Scherder, E.J.A.; Corbett, A. Pain management in patients with dementia. Clin. Interv. Aging. 2013, 8, 1471–1482. [Google Scholar] [CrossRef] [Green Version]
- Defrin, R.; Amanzio, M.; de Tommaso, M.; Dimova, V.; Filipovic, S.; Finn, D.P.; Gimenez-Llort, L.; Invitto, S.; Jensen-Dahm, C.; Lautenbacher, S.; et al. Experimental pain processing in individuals with cognitive impairment: Current state of the science. Pain 2015, 156, 1396–1408. [Google Scholar] [CrossRef]
- Leveille, S.G.; Jones, R.N.; Kiely, D.K.; Hausdorff, J.M.; Shmerling, R.H.; Guralnik, J.M.; Kiel, D.P.; Lipsitz, L.A.; Bean, J.F. Chronic Musculoskeletal Pain and the Occurrence of Falls in an Older Population. AMA 2009, 302, 2214–2221. [Google Scholar] [CrossRef]
- New Analysis Finds the Pandemic Has Significantly Increased Older People’s Need for Social Care. Age UK. 2021. Available online: https://www.ageuk.org.uk/latest-press/articles/2021/new-analysis-finds-the-pandemic-has-significantly-increased-older-peoples-need-for-social-care/ (accessed on 21 May 2021).
- Ferrell, B.A.; Ferrell, B.R.; Osterweil, D. Pain in the nursing home. J. Am. Geriatr. Soc. 1990, 38, 409–414. [Google Scholar] [CrossRef]
- Basler, H.-D.; Luckmann, J.; Wolf, U.; Quint, S. Fear-avoidance Beliefs, Physical Activity, and Disability in Elderly Individuals With Chronic Low Back Pain and Healthy Controls. Clin. J. Pain 2008, 24, 604–610. [Google Scholar] [CrossRef]
- Bishop, K.L.; Ferraro, F.R.; Borowiak, D.M. Pain management in older adults. Clin. Gerontol. 2001, 23, 33–42. [Google Scholar] [CrossRef]
- Kunz, M.; Scharmann, S.; Hemmeter, U.; Schepelmann, K.; Lautenbacher, S. The facial expression of pain in patients with dementia. Pain 2007, 133, 221–228. [Google Scholar] [CrossRef] [PubMed]
- Beach, P.A.; Huck, J.T.; Miranda, M.M.; Foley, K.T.; Bozoki, A.C. Effects of Alzheimer Disease on the Facial Expression of Pain. Clin. J. Pain 2016, 32, 478–487. [Google Scholar] [CrossRef] [PubMed]
- Jones, J.S.; Johnson, K.; McNinch, M. Age as a risk factor for inadequate emergency department analgesia. Am. J. Emerg. Med. 1996, 14, 157–160. [Google Scholar] [CrossRef]
- Zuliani, G.; Bonetti, F.; Magon, S.; Prandini, S.; Sioulis, F.; D’Amato, M.; Zampi, E.; Gasperini, B.; Cherubini, A. Subsyndromal Delirium and Its Determinants in Elderly Patients Hospitalized for Acute Medical Illness. J. Gerontol. Ser. A 2013, 68, 1296–1302. [Google Scholar] [CrossRef] [Green Version]
- Achterberg, W.P.; Erdal, A.; Husebo, B.S.; Kunz, M.; Lautenbacher, S. Are Chronic Pain Patients with Dementia Being Undermedicated? J. Pain Res. 2021, 14, 431–439. [Google Scholar] [CrossRef]
- Jensen-Dahm, C.; Palm, H.; Gasse, C.; Dahl, J.B.; Waldemar, G. Postoperative Treatment of Pain after Hip Fracture in Elderly Patients with Dementia. Dement. Geriatr. Cogn. Disord. 2016, 41, 181–191. [Google Scholar] [CrossRef]
- Auxier, J.N.; Roberts, S.; Laing, L.; Finch, L.; Tung, S.; Hung, L. An Appreciative Inquiry into Older Adults’ Pain Experience in Long Term Care Facilities: A Pain Education Initiative. Int. Pract. Dev. J. 2020, 10. Available online: https://www.researchgate.net/profile/Lillian-Hung/publication/341354723_An_appreciative_inquiry_into_older_adults’_pain_experience_in_long_term_care/links/5ebc212692851c11a8675db0/An-appreciative-inquiry-into-older-adults-pain-experience-in-long-term-care.pdf (accessed on 1 January 2022). [CrossRef]
- Ferreira-Valente, A.; Damião, C.; Pais-Ribeiro, J.; Jensen, M.P. The Role of Spirituality in Pain, Function, and Coping in Individuals with Chronic Pain. Pain Med. 2020, 21, 448–457. [Google Scholar] [CrossRef]
- McParland, J.L.; Knussen, C. Just world beliefs moderate the relationship of pain intensity and disability with psychological distress in chronic pain support group members. Eur. J. Pain 2010, 14, 71–76. [Google Scholar] [CrossRef]
- Abdulla, A.; Adams, N.; Bone, M.; Elliott, A.M.; Gaffin, J.; Jones, D.; Knaggs, R.; Martin, D.; Sampson, L.; Schofield, P.; et al. Guidance on the management of pain in older people. Age Ageing 2013, 42, i1–i57. [Google Scholar] [CrossRef] [Green Version]
- Fowler-Davis, S.; Cholerton, R.; Philbin, M.; Clark, K.; Hunt, G. Impact of the Enhanced Universal Support Offer to Care Homes during COVID-19 in the UK: Evaluation Using Appreciative Inquiry. Health Soc. Care. Community 2021. Available online: https://onlinelibrary.wiley.com/doi/10.1111/hsc.13612 (accessed on 1 January 2022).
- Harvey, N.; Holmes, C.A. Nominal group technique: An effective method for obtaining group consensus. Int. J. Nurs. Pract. 2012, 18, 188–194. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Ozamiz-Etxebarria, N.; Dosil-Santamaria, M.; Picaza-Gorrochategui, M.; Idoiaga-Mondragon, N. Stress, anxiety, and depression levels in the initial stage of the COVID-19 outbreak in a population sample in the northern Spain. Cad. De Saude Publica 2020, 36, e00054020. [Google Scholar] [CrossRef] [PubMed]
- Cohen, D.B.; Luck, M.; Hormozaki, A.; Saling, L.L. Increased meaningful activity while social distancing dampens affectivity; mere busyness heightens it: Implications for well-being during COVID-19. PLoS ONE 2020, 15, e0244631. [Google Scholar] [CrossRef] [PubMed]
- Lei, S.; Jiang, F.; Su, W.; Chen, C.; Chen, J.; Mei, W.; Zhan, L.-Y.; Jia, Y.; Zhang, L.; Liu, D.; et al. Clinical characteristics and outcomes of patients undergoing surgeries during the incubation period of COVID-19 infection. eClinicalMedicine 2020, 21, 100331. [Google Scholar] [CrossRef]
- Majumdar, P.; Biswas, A.; Sahu, S. COVID-19 pandemic and lockdown: Cause of sleep disruption, depression, somatic pain, and increased screen exposure of office workers and students of India. Chronobiol. Int. 2020, 37, 1191–1200. [Google Scholar] [CrossRef]
- Ping, W.; Zheng, J.; Niu, X.; Guo, C.; Zhang, J.; Yang, H.; Shi, Y. Evaluation of health-related quality of life using EQ-5D in China during the COVID-19 pandemic. PLoS ONE 2020, 15, e0234850. [Google Scholar] [CrossRef]
- Simard, J.; Volicer, L. Loneliness and Isolation in Long-term Care and the COVID-19 Pandemic. J. Am. Med. Dir. Assoc. 2020, 21, 966–967. [Google Scholar] [CrossRef]
- Gillis, C.; Gill, M.; Marlett, N.; MacKean, G.; Germann, K.; Gilmour, L.; Nelson, G.; Wasylak, T.; Nguyen, S.; Araujo, E.; et al. Patients as partners in Enhanced Recovery After Surgery: A qualitative patient-led study. BMJ Open 2017, 7, e017002. [Google Scholar] [CrossRef] [Green Version]
- Moscelli, G.; Siciliani, L.; Gutacker, N.; Cookson, R. Socioeconomic inequality of access to healthcare: Does choice explain the gradient? J. Health Econ. 2018, 57, 290–314. [Google Scholar] [CrossRef]
- Linton, S.J.; Vlaeyen, J.; Ostelo, R. The back pain beliefs of health care providers: Are we fear-avoidant? J. Occup. Rehabil. 2002, 12, 223–232. [Google Scholar] [CrossRef] [PubMed]
- Bowey-Morris, J.; Purcell-Jones, G.; Watson, P.J. Test-Retest Reliability of the Pain Attitudes and Beliefs Scale and Sensitivity to Change in a General Practitioner Population. Clin. J. Pain 2010, 26, 144–152. [Google Scholar] [CrossRef] [PubMed]
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. |
© 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
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
APA StyleFowler Davis, S., Humphreys, H., Maden-Wilkinson, T., Withers, S., Lowe, A., & Copeland, R. J. (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(6), 1130. https://doi.org/10.3390/healthcare10061130