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What do people living with chronic pain want from a pain forecast? A research prioritization study.

ABSTRACT: Because people with chronic pain feel uncertain about their future pain, a pain-forecasting model could support individuals to manage their daily pain and improve their quality of life. We conducted two patient and public involvement activities to design the content of a pain-forecasting model by learning participants' priorities in the features provided by a pain forecast and understanding the perceived benefits that such forecasts would provide. The first was a focus group of 12 people living with chronic pain to inform the second activity, a survey of 148 people living with chronic pain. Respondents prioritized forecasting of pain flares (100, or 68%) and fluctuations in pain severity (94, or 64%), particularly the timing of the onset and the severity. Of those surveyed, 75% (or 111) would use a future pain forecast and 80% (or 118) perceived making plans (e.g., shopping, social) as a benefit. For people with chronic pain, the timing of the onset of pain flares, the severity of pain flares and fluctuations in pain severity were prioritized as being key features of a pain forecast, and making plans was prioritized as being a key benefit.

SUBMITTER: Little CL

PROVIDER: S-EPMC10569639 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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What do people living with chronic pain want from a pain forecast? A research prioritization study.

Little Claire L CL Druce Katie L KL Dixon William G WG Schultz David M DM House Thomas T McBeth John J

PloS one 20231012 10

Because people with chronic pain feel uncertain about their future pain, a pain-forecasting model could support individuals to manage their daily pain and improve their quality of life. We conducted two patient and public involvement activities to design the content of a pain-forecasting model by learning participants' priorities in the features provided by a pain forecast and understanding the perceived benefits that such forecasts would provide. The first was a focus group of 12 people living ...[more]

PMID: 37824568

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Project description:Priority setting workshops enable researchers to take the lead from people with relevant lived experience, and design research which authentically responds to community needs. Large-scale global priority setting exercises have previously identified key research questions related to paediatric and adolescent HIV treatment, prevention, and service delivery. However, priority setting workshops focused on the needs of young people living with HIV are lacking in southern Africa. Here, we report the outcome of a priority setting workshop organised in Cape Town, South Africa with 19 young people living with HIV and their parents and caregivers. Workshops were facilitated by trained research and clinical staff, who provided a plain-language introduction to research questions for the attendees. During the day-long workshop, attendees developed a list of research questions concerning HIV-related physical health, mental health, and psychosocial support and later voted on the order of importance for the questions which they had collectively identified. Facilitators did not prompt any questions or amend the phrasing of questions generated by the attendees. A cure for HIV was highlighted as the most important research priority for young people living with HIV. Other priorities for young people included the effects of antiretroviral therapy on the body, the brain, and their social relationships, causes of emotional issues such as depression and mood swings, and potential interventions to reduce HIV-related stigma in schools through positive education for teachers and students. Research priorities for parents and caregivers included improving antiretroviral adherence through long-acting injections, mental health impacts of HIV status disclosure without consent, and improving support provided by local community clinics. The research questions identified through this workshop may be used by researchers to develop future studies which truly benefit young people living with HIV in South Africa and beyond.

Project description:BackgroundChronic noncancer pain (CNCP) is a major health issue among the older population, affecting multiple aspects of individual functioning. Recently, the use of eHealth solutions has been proposed in supporting chronic pain self-management even among older adults, although some barriers have emerged. Few qualitative studies, with none conducted in Mediterranean countries, have explored older people's experiences and perceptions regarding the types of strategies used to cope with chronic pain and eHealth tools for chronic pain management.ObjectiveThis study's objectives were to explore the perspectives and experiences of older adults regarding the coping strategies used to manage chronic pain, the use of digital technologies in everyday life, and the potentiality and barriers in using those technologies for health and pain management.MethodsA multimethod approach (ie, self-report questionnaires and a semistructured interview) has been adopted targeting older adults (ie, those who are aged 65 to 80 years and presenting different types of CNCP) who are attending a pain therapy center in Italy. Qualitative answers were analyzed using thematic analysis.ResultsOverall, participants reported using a variety of pain coping strategies; however, they showed an attitude of resignation to their CNCP condition. Nearly 70% (12/18) of the interviewees referred to using digital technologies for purposes related to health and pain management, mostly involving very basic management activities. The participants' opinions on the useful functions that need to be incorporated in eHealth tools for chronic pain management have been categorized into four themes: (1) specific pain self-management skills, (2) support in organizing various health-related aspects, (3) sharing experiences with others, and (4) increasing pain-related personal knowledge. Conversely, the following potential barriers to adopting eHealth tools emerged: (1) computer illiteracy, (2) negative effects or risks, (3) impersonal interaction, and (4) physical limitations.ConclusionsThe use of eHealth solutions still seems low, often being accompanied by a perceived lack of digital skills or attitude among a sample of older adults from Italy with CNCP. Before introducing innovative eHealth solutions, it would be of primary importance to take action to enhance, on the one hand, self-efficacy in pain management and, on the other, the digital literacy level among older people.

Project description:ObjectivesChronic pain treatment engagement is dominated by pharmaceutical methods, while previous research has assessed barriers to uptake of non-pharmaceutical treatments, there has not been research one step earlier in the treatment development pipeline; assessing barriers to take part in research that develops non-pharmaceutical chronic pain treatment methods.DesignA two-phase approach was used to assess barriers and facilitators to research participation for people living with chronic pain. Online focus groups were run in phase 1, generating qualitative data, while phase 2 used the themes identified within phase 1 to assess agreement and disagreement.SettingParticipants consisted of people with chronic pain across the UK.Participants36 participants with chronic pain conditions (defined as any pain lasting or recurring for more than 3 months) were recruited for phase 1. Seven participants could not attend their focus group or a subsequent session, leaving a final sample size of 29 participants (83% female, 17% male; age=20-78 years, M=44.3 years). Phase 2 consisted of 103 participants (89% female, 10% male, 1% prefer not to say; age=20-80 years, M=46.6 years).ResultsPhase 1 identified the largest barrier to be 'distrust', relating to a distrust of medical and research professionals, distrust of confidentiality assurances and distrust that the research would have an impact. The greatest facilitator identified was 'improved accessibility', which related to the accessibility of the research environment, the type of research being conducted and accessible advertisement of the research within trusted settings. Phase 2 found around 80% agreement with all facilitator themes and a mix of opinions regarding barrier themes, highlighting the individuality of barriers experienced when living with chronic pain.ConclusionsAddressing the barriers and implementing the facilitators identified here ensures that patient participants are comfortable and safe within research environments. Furthermore, this project provides recommendations for researchers to follow to help increase patient engagement in research studies.

Project description:ObjectiveChronic pain is increasingly recognized as a common and disabling problem for people living with HIV (PLWH). In a recent systematic review of psychosocial factors associated with chronic pain in PLWH, it was reported that very few studies to date have examined protective psychological factors that might help mitigate chronic pain for PLWH. The current study examined pain-specific resilience in relation to clinical and experimental pain, as well as pain coping in PLWH and chronic pain. Pain-specific resilience specifically refers to the ability to maintain relatively stable, healthy levels of psychological and physical functioning in the face of ongoing and persistent pain.MethodsA total of 85 PLWH (mean CD4 = 643; 13% detectable viral load ≥200; 99% on antiretroviral therapy) who met criteria for chronic pain (>3 consecutive month's duration) were enrolled. Medical records were reviewed to confirm clinical data. All participants provided sociodemographic information prior to completing the following validated measures: Pain Resilience Scale (PRS), Coping Strategies Questionnaire-Revised (CSQ-R), Center for Epidemiologic Studies - Depression Scale (CES-D), and the Brief Pain Inventory - Short Form (BPI-SF). They then completed a quantitative sensory testing battery designed to assess tolerance for painful heat and cold stimuli.ResultsIn adjusted multiple regression models controlling for covariates, greater pain-specific resilience was significantly associated with less pain interference (p = 0.022) on the BPI-SF, less pain catastrophizing (p = 0.002), greater use of distraction (p = 0.027) and coping self-statements (p = 0.039) on the CSQ-R, as well as significantly greater heat pain tolerance (p = 0.009). Finally, results of a parallel multiple mediation model demonstrated that the effect of pain-specific resilience on heat pain tolerance was indirectly transmitted through less pain catastrophizing (95% confidence interval:0.0042 to 0.0354), but not use of distraction (95% confidence interval: -0.0140 to 0.0137) or coping self-statements (95% confidence interval: -0.0075 to 0.0255).ConclusionThe findings suggest that pain-specific resilience may promote adaptation and positive coping in PLWH and chronic pain.

Project description:BackgroundA large proportion of people living with hip or knee pain do not consult health care professionals. Pain severity is often believed to be the main reason for help seeking in this population; however the evidence for this is contradictory. This study explores the importance of several potential risk factors on help seeking across different practitioner groups, among adults living with chronic hip or knee pain in a large community sample.MethodsHealth care utilization, defined as having seen a family doctor (GP) during the past 12 months; or an allied health professional (AHP) or alternative therapist during the past 3 months, was assessed in a community based sample aged 35 or over and reporting pain in hip or knee. Adjusted odds ratios were determined for social deprivation, rurality, pain severity, mobility, anxiety/depression, co-morbidities, and body mass index.ResultsOf 1119 persons reporting hip or knee pain, 52% had pain in both sites. Twenty-five percent of them had seen a doctor only, 3% an AHP only, and 4% an alternative therapist only. Thirteen percent had seen more than one category of health care professionals, and 55% had not seen any health care professional. In the multivariate model, factors associated with consulting a GP were mobility problems (OR 2.62 (1.64-4.17)), urban living (OR 2.40 (1.14-5.04) and pain severity (1.28 (1.13-1.44)). There was also some evidence that obesity was associated with increased consultation (OR 1.72 (1.00-2.93)). Factors were similar for consultation with a combination of several health care professionals. In contrast, seeing an alternative therapist was negatively associated with pain severity, anxiety and mobility problems (adjusting for age and sex).ConclusionDisability appears to be a more important determinant of help-seeking than pain severity or anxiety and depression, for adults with chronic pain in hip or knee. The determinants of seeking help from alternative practitioners are different from determinants of consulting GPs, AHPs or a combination of different health care providers.

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What do people living with chronic pain want from a pain forecast? A research prioritization study.

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What do people living with chronic pain want from a pain forecast? A research prioritization study.

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