Using Patient Perspectives to Inform the Development of a Behavioral Intervention for Chronic Pain in Patients with HIV: A Qualitative Study

Merlin, Jessica S.; Young, Sarah; Johnson, Mallory O.; Saag, Michael S.; Demonte, William; Modi, Riddhi; Shurbaji, Sally; Anderson, William A.; Kerns, Robert D.; Kertesz, Stefan G.; Davies, Susan L.; Turan, Janet M.

doi:10.1093/pm/pnw150

Cited by 14 publications

(28 citation statements)

References 41 publications

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“…"My social life has really taken a blow because I'm a bit scared to do things in case the pain comes back and I'm not in my own safe environment" (14).…”

Section: I)mentioning

confidence: 99%

“…"With the more acute pains, it makes me feel tense, it makes me tense up and then, and then my stomach tenses up and then it can get worse" (14).…”

Section: Ii) Cycles Of Anxietymentioning

confidence: 99%

“…Although having a "safe environment" (12) such as "being at home" felt "more comfortable" (14), it was also viewed as a "trap" (7).…”

Section: V) Breaking the Cyclementioning

confidence: 99%

“…For others, their search was focused on the need for psychological support to manage the disease, or feeling more equipped to cope or control the pain: (14).…”

Section: "I Don't Think I've Been Offered Anything a Lot Of It Is Mementioning

confidence: 99%

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‘It’s about willpower in the end. You’ve got to keep going’: a qualitative study exploring the experience of pain in inflammatory bowel disease

Sweeney

Moss‐Morris

Czuber‐Dochan

et al. 2019

British Journal of Pain

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Background: Pain is a widely experienced symptom of inflammatory bowel disease (IBD), which has significant psychological and functional impacts on patients. Understanding the aetiology and management of chronic pain is a poorly understood area of IBD research. This qualitative study aimed to explore the experiences of individuals with IBD and pain, the pain management strategies they use and any needs for future pain management interventions. Methods: In all, 14 individuals with IBD were purposively recruited and interviewed (face-to-face or telephone) using a topic guide. Interviews were transcribed and analysed using inductive thematic analysis. Results: Themes identified were ‘vicious cycles’, ‘findings solutions’ and ‘attitudes’. The experience and impact of pain were rarely viewed in isolation, but rather within the context of a cycle of IBD symptoms. Other ‘vicious cycles’ identified included anxiety, avoidance and inactivity, and poor understanding and communication. Pain management included short- and long-term strategies. Searching for a solution for pain had an emotional impact on individuals. There were contrasting attitudes from participants, including defeat, tolerance and acceptance. Conclusion: This study provides an understanding of the experience of pain in IBD. The interaction of pain with accompanying IBD symptoms has an emotional and physical impact on individuals, and creates a barrier to adequate assessment, understanding and treatment of pain. Patients rely on their own experiences, and a trial and error approach to apply helpful strategies. Adjuvant behavioural therapies may be beneficial for patients experiencing pain and psychological distress, and to facilitate self-management.

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“…"My social life has really taken a blow because I'm a bit scared to do things in case the pain comes back and I'm not in my own safe environment" (14).…”

Section: I)mentioning

confidence: 99%

“…"With the more acute pains, it makes me feel tense, it makes me tense up and then, and then my stomach tenses up and then it can get worse" (14).…”

Section: Ii) Cycles Of Anxietymentioning

confidence: 99%

“…Although having a "safe environment" (12) such as "being at home" felt "more comfortable" (14), it was also viewed as a "trap" (7).…”

Section: V) Breaking the Cyclementioning

confidence: 99%

“…For others, their search was focused on the need for psychological support to manage the disease, or feeling more equipped to cope or control the pain: (14).…”

Section: "I Don't Think I've Been Offered Anything a Lot Of It Is Mementioning

confidence: 99%

See 2 more Smart Citations

‘It’s about willpower in the end. You’ve got to keep going’: a qualitative study exploring the experience of pain in inflammatory bowel disease

Sweeney

Moss‐Morris

Czuber‐Dochan

et al. 2019

British Journal of Pain

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“…Chronic pain Merlin et al [67] 2016 Respiratory tract inflamm 2 Bates et al [76] 2016 Opiates+Anx-Depr 3 +CVD 4 Zippel-Schultz et al [68] 2016 Dengue virus infection Thisyakorn et al [49] 2016 Dyslipiddemia Streinu-Cercel et al [8] 2016…”

mentioning

confidence: 99%

HIV Co-Morbidities and Multi-Morbidities

Archer¹

2016

HIV Curr Res

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Several challenges confront those patients living and growing older with HIV disease with regard to non-communicable diseases, including cancer, addictive behaviors, fracture prevalence, heart disease and affective disorders, that present physical and mental health problems among the HIV positive [1-5]. Indeed, frailty and a conglomeration of behavioral risk factors are associated with multisystem co-morbid vulnerability that predict survival and multi-morbidity incidence among patients [6,7]. In a cohort of Romanian HIV patients, Streinu-Cercel et al. [8] observed moderately high prevalence of chronic renal disorders accompanied by moderately low occurrence of osteopenia and osteoporosis in comparison with these patents from other European countries with smoking addict an important risk factor renal and cardiac conditions, as well as impaired bone metabolism [9], for further bone health co-morbidities). Bolduc et al. [10] have listed several medical complications and multi-morbidities accompanied by multiple infection risk, including Pneumocystis jirocii, pneumonia, candida esophagitis, toxoplasmic encephalitis, tuberculosis, crytococcal meningitis, disseminate Mycobacterium avium complex, and cytomegalovirus retinitis, as well as 'wasting' syndrome and HIVencephalitis. According to the definitive study performed by Kilbourne et al. [11] among the most commonly observed HIV comorbidities presented by patients are to be included: oral candidiasis (21%), peripheral neuropathy (16%), and herpes zoster (16%) whereas those general medical comorbidities involved chemical hepatitis (53%), hypertension (24%), and hyperlipidemia (17%) with neuropsychiatric comorbidities offering a greater burden of disease among HIV-infected patients indicating that 32% of patients presented anxiety, 4% mania, 4% schizophrenia, and 11% cognitive impairment/dementia although estimations seem bedeviled by variations in symptom expression [12]. The seriousness of these latter cognitive deficits appears to constitute an especially heavy burden for everyday functioning and quality-oflife parameters [13,14]. The etiopathogenesis of the neuropsychiatric comorbidities, most particularly depressiveness and mood disorders, among HIV-infected patients affects deleteriously and markedly the quality-of-life, medication compliance, and disease prognosis in those afflicted; not least of all, the prevailing relationships between HIVrelated stigma, HIV-disclosure, social support networks, and mood and depression among patients await description and expression [15]. The situation is rendered even more serious in view of the inadequacy of certain regional public health medical services especially among minorities and vulnerable groups that require more effective health practices and long-term policies [16].

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Efficacy of a Pain Self-Management Intervention Tailored to People With HIV

Jones,

Long,

Bair

et al. 2024

JAMA Intern Med

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ImportanceChronic pain is a common condition for which efficacious interventions tailored to highly affected populations are urgently needed. People with HIV have a high prevalence of chronic pain and share phenotypic similarities with other highly affected populations.ObjectiveTo evaluate the efficacy of a behavioral pain self-management intervention called Skills to Manage Pain (STOMP) compared to enhanced usual care (EUC).Design, Setting, and ParticipantsThis randomized clinical trial included adults with HIV who experienced at least moderate chronic pain for 3 months or more. The study was set at the University of Alabama at Birmingham and the University of North Carolina–Chapel Hill large medical centers from August 2019 to September 2022.InterventionSTOMP combined 1-on-1 skill-building sessions delivered by staff interventionists with group sessions co-led by peer interventionists. The EUC control group received the STOMP manual without any 1-on-1 or group instructional sessions.Main Outcomes and MeasuresThe primary outcome was pain severity and the impact of pain on function, measured by the Brief Pain Inventory (BPI) summary score. The primary a priori hypothesis was that STOMP would be associated with a decreased BPI in people with HIV compared to EUC.ResultsAmong 407 individuals screened, 278 were randomized to STOMP intervention (n = 139) or EUC control group (n = 139). Among the 278 people with HIV who were randomized, the mean (SD) age was 53.5 (10.0) years; 126 (45.0%) identified as female, 146 (53.0%) identified as male, 6 (2.0%) identified as transgender female. Of the 6 possible 1-on-1 sessions, participants attended a mean (SD) of 2.9 (2.5) sessions. Of the 6 possible group sessions, participants attended a mean (SD) of 2.4 (2.1) sessions. Immediately after the intervention compared to EUC, STOMP was associated with a statistically significant mean difference for the primary outcome, BPI total score: −1.25 points (95% CI, −1.71 to −0.78 points; P &lt; .001). Three months after the intervention, the mean difference in BPI total score remained statistically significant, favoring the STOMP intervention −0.62 points (95% CI, −1.09 to −0.14 points; P = .01).Conclusion and RelevanceThe findings of this randomized clinical trial support the efficaciousness of STOMP as an intervention for chronic pain in people with HIV. Future research will include implementation studies and work to understand the optimal delivery of the intervention.Trial RegistrationClinicalTrials.gov Identifier: NCT03692611

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Using Patient Perspectives to Inform the Development of a Behavioral Intervention for Chronic Pain in Patients with HIV: A Qualitative Study

Cited by 14 publications

References 41 publications

‘It’s about willpower in the end. You’ve got to keep going’: a qualitative study exploring the experience of pain in inflammatory bowel disease

‘It’s about willpower in the end. You’ve got to keep going’: a qualitative study exploring the experience of pain in inflammatory bowel disease

HIV Co-Morbidities and Multi-Morbidities

Efficacy of a Pain Self-Management Intervention Tailored to People With HIV

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